Takedown yesterday

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ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 2/25/2010 12:43 PM (GMT -6)   
Hi everyone,
it's been a while since I posted on her but a quick recap is bad uc which turned into a 3 step jpouch.
I just had my take down yesterday and my pouch has only just started to output.
It feels good to have my tummy back, however I had the stoma for 12 months so was very use to it. I am scared about my recovery and how bumpy the road will be. I am the sort of person to try my hardest at something so will definitely give the jpouch a good go. I know I could quite happily go back to grumble (my stoma) if needs be.
There are so many people reporting on how bad life with a jpouch is but my research has pointed in the opisite direction.
I will post on my progress and how it really is with a jpouch.
Hope this might help those considering it.
Cheers
Elli
29 years old and former UC sufferer.

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 2/25/2010 4:14 PM (GMT -6)   
Good luck! I hope your recovery is easy and, yes, please let us know how it goes. It is good for me to hear positive things, so I might have something to look forward to
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
Now just trying to hold out as long as possible until we can try the next surgery
Imodium (4/day), Questran (3/day)


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 2/25/2010 6:57 PM (GMT -6)   
My son is having his takedown, after a three stage J pouch, tomorrow morning. We will also let everyone know how it goes.

broadwind
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 2/25/2010 7:35 PM (GMT -6)   
I just had my take down yesterday. I too had to have a 3 step J-Pouch surgery. My pouch has started working today and it works great. No pain, or blood and stool is formed like little nuggets
 


ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 2/25/2010 9:36 PM (GMT -6)   
Good to hear from others. So far I have full control. Output is like with an early stoma, however my docs are only lettin me having fluids so no food to bulk on yet. No pain or discomfort from passing anything. I have fallen asleep for 3 hours this evening and just got up to go to the toilet through choice. No sign of any leakage or anything like that.

Should start on soft food tomorrow so hoping that will help thicken.
Passing gas again! A lot noisier than with stoma, however only noisy when in the toilet which is good!
Elli 28
UC since 17
Azathioprine, prednisolone, Asacol,
blood transfusions, iron infusions.
Colon Removed 18 March 09.
Ileostomy
 


ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 2/26/2010 2:54 AM (GMT -6)   
I have been given the all clear to eat and if I keep breakfast down I can go home today. This is a big boost :)
made it through the night with no leaks or problems.
Still passing gas and output still not formed ( not suprised as no food yet!)
Elli 28
UC since 17
Azathioprine, prednisolone, Asacol,
blood transfusions, iron infusions.
Colon Removed 18 March 09.
Ileostomy
 


broadwind
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 2/26/2010 3:54 PM (GMT -6)   
I'm still in hospital for a few more days. I also, had no leakage, i also noticed lots of gas farting coming out when i go to the toilet. Semi formed stool, not too acidic although i was warned by my doc when i start on full normal foods again it will become more difficult until the pouch adjusts. SO far so good anyway.
 


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 2/26/2010 4:38 PM (GMT -6)   
Surgery went very well today...completely uneventful!. All the work was done through the stoma hole. More pain than expected but controllable with meds.

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 2/28/2010 10:06 AM (GMT -6)   
just wondering how everyone is doing?

ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 2/28/2010 1:06 PM (GMT -6)   
Glad to hear from others again - lets keep moving forward!
well, its been 4 days since takedown for me now and my head is a lot clearer now I have had a few good nights sleep.
I have slept without any leaks which is great, and I am also sleeping well only getting up once or twice in the night (just the same as with my stoma).
I two found the pain after surgery more than I was expecting.  In recovery they asked me to take deep breaths on the oxygen mask but couldnt as my tummy hurt.  They soon got me on a self control pain pump which I used for about an hour and a half until the worst of it went away.  Still taking some pain meds at home as still sore - hurts when coughing, moving etc..
I am eating small child size portions of food at the moment as feel bloated quite a lot - normal after this type of surgery though and happened after my first 2, end and loop ileostomy surgeries.  Also eating very safe food.
Total control over when I go to the toilet.  Going about 6 times a day the moment.  In a way I am worried as that is so much lower than what I was expecting.  I am getting a half and half ratio of formed to loose BMs.  Butt burn has set in so will be googling shortly for help with that!!  Butt burn is far less to none existant when BM are formed.
All in all 4 days out feel very happy with the result. 
My girlfriend and I cleared out my stoma supplies last night which I found hard to do.  It gave me my life back and I was almost scared to turn my back on it. 
 

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 2/28/2010 1:35 PM (GMT -6)   
Glad things are progressing well. My son is now two days post surgery and they have not started him on anything (including liquids) yet. He had a bowel movement this morning but his belly is still distended so they are waiting another day. He also needed to have a catheter inserted yesterday due to the fact that his bladder was full but he was not yet able to pee. This was not very pleasant. He is very worried that when they remove it tomorrow that he will still have a problem...the docs are not worried though.

Keep us posted.

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 3/1/2010 3:07 PM (GMT -6)   
Today is third day post surgery. Dillon is having numerous bowel movements that are all very watery which is to be expected since he still cannot have any food. His belly is still somewhat destended and they are waiting for this to go away before food is started. Pain is pretty much no longer an issue. Today he is dressed and going for extended walks. Recovery is actually going quite quickly.

How are you guys doing?

ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 3/2/2010 8:36 AM (GMT -6)   
Hi Collicat,
I am really pleased to hear that your son is doing better now.  Walks are a big help to wake up the gut after surgery.
All my movements were watery before I got some food through my system - even then it took a good 6 meals I think to get it to thicken.  Mash and white bread is what i started on.
I am eating well now but still get bloated quickly and feel like I need to go to the toilet after each meal.  I am holding it for well over an hour from when the urge first sets in which is good.  I understand the urges will lesson and more control will come with time.
I have been on youtube watching a load of videos which I have found great.  If you are interested search for "ucvlog" on you tube and a guy called Dennis has his whole experience on video diary.
I will be looking at the progress in terms of weeks, not days so have to stay patient.
:)

broadwind
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 3/2/2010 11:49 PM (GMT -6)   
Yes im doing pretty well also . My surgery was last Thursday 25th Feb. Im out of hospital and back home. I had butt burn up to yesterday but went and bought some soft flushable wipes and some 15.25% zinc oxide cream. Both work great, and dont have much burning anymore.

Took immodium in the morning and that slows things down greatly. Probably only go to the toilet 6 times a day now and comes out almost formed and not much butt burn. So far so good. Still some surgery pain but i walked 5km today so perhaps its related to the walking so close to the surgery.

I watched dennis' videos also, which were very helpful, I'm thinking that Imodium is more of a benefit than Dennis suggests. He only uses it occasionally whereas i think if it was used daily it would greatly help the frequency and acid content.

Best thing to wake up bladder and bowels if definitely walking and showering.
 


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 3/3/2010 9:37 PM (GMT -6)   
Wow! I'm so happy to read your stories! (i'm actually tearing up) I really hope to someday give a j-pouch a try, but i read mostly bad stuff. So, thank you all for sharing. Please Please keep us posted. It seems that most people share their recovery, and then we never hear from them again.
So thank you guys and good luck!

oh yeah, another question. stage one is colectomy, stage three is reversal, but stage two is where i get kind of fuzzy. I know they make the j-pouch, but which part of the small intestine do they make it out of. Do they take the end of the intestine and take out the stoma, make the j-pouch and then make a new stoma with new intestine. OR do they leave the stoma alone, make the pouch out of the middle, and re sect the intestine. OR something else.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
i only take vitamins now, when I WANT to. :)
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."

Post Edited (Chasblah) : 3/3/2010 8:48:15 PM (GMT-7)


ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 3/4/2010 5:32 AM (GMT -6)   
Broadwind - Yes i too will be using Loperimide on a daily basis to help with acid and number of BMs a day.  I spoke with my stoma nurse (with a Jpouch i still come under their care) and said a week out i wanted to start with loperimde to help with those issues and she thought that was a good idea.  So far today (11:30am) i have had breakfast with no urge to go to the toilet yet.  I took one 2mg loperimde a couple of hours ago.  I am going to try one mid afternoon and then one at bed.  Adjust tomorrow depending on results!  I am feeling hopeful though.  I have also got some metamucil wafers on order to help with acid and bulk things up.  This might take the place of loperimide is it works.
 
Chasblah - I had mine done over 3 steps.  Step one remove colon and make an end ileostomy.  Step two was make Jpouch out of the end of my intestines, join with anal mucles and then make a loop ileostomy further up my intestines track and mount it at the same stoma site as before.  Step 3 was just close the loop.  You are right, there is so many bad vibes about Jpouch online that it put me right off to begin with.  The fact is, this treatment is the gold standard for UC so there is far more success than failure.  I took to opinion that if it all fails i can go back to a stoma - but i couldnt have lived the rest of my life thinking "what if".  I have to try it.  So far so good!!

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 3/5/2010 7:53 PM (GMT -6)   
Thanks ElliUK!
I hope all goes well for you.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
i only take vitamins now, when I WANT to. :)
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 3/10/2010 2:10 PM (GMT -6)   
We are now 12 days post surgery. Dillon came home on day 8. We were longer than normal due to the fact that he ended up with a partial obstruction from the swelling at the new join site. He had an anal tube inserted due the large amount of output and was given NOTHING (except the odd ice chip) until the distention completely subsided and the output decreased. This took a couple of days. Before he left the hospital he had been eating small amounts for two days.

He is now doing really well. Actually much better that we expected. He is having about 8-9 bowel movements a day and is usually only getting up 1x during the night. The other night he slept for 7 hours. The output has also thickened up. Yesterday, at one point, is was actually formed...very skinny but formed! He is drinking a lot so he is not getting dehydrated and is feeling really good. He has also put on 4 pounds since he left the hospital.

Hope everyone else is doing well,
Cathy

erf2076
New Member


Date Joined Mar 2013
Total Posts : 2
   Posted 3/23/2013 9:20 AM (GMT -6)   
I'm approx 1.5 weeks post op from takedown surgery. Everything seems to be pretty good except for two things. The urgency is overwhelming and I find it difficult to "hold" it. Also, when I do go to the bathroom, my body forces the "poop" out in a somewhat violent way as in a way of contracting! This can happen almost every time, it's somewhat painful, and causes my bum to be sore enough that I have to put ice pack on it. It's hard to explain but it feels like contractions, when it happens 9 times out of 10 it forces "poop" out, I'm just trying to figure out why it's doing it.. Help please!!!

mrsbugzy
Veteran Member


Date Joined May 2012
Total Posts : 641
   Posted 3/23/2013 9:47 AM (GMT -6)   
Erf,
that is normal.. I have that a lot too.. it is almost as tho someone sqeezed your tummy and SHOVED all the poop out..it is just your j pouch adjusting..tht is what the doc told me.
I do still go 6-8 times a day ( one year post pouch), but it is pretty well controled. I do notice that certain foods will make me have urgency, but it is not often.
Something else to remember, if you drink a lot of red iquids, your stool will appear to be bloody, but it isn't... so don't panic if you drink a gallon of red koolaid or juice and then think you are bleeding internally...not so. :)
But glad to hear all things are going well for all of you :)
Hear is a dumb question, I have seen many people say they actually miss their stoma after take down... has anyone ever had a "stoma funeral"... like a party where you have friends and family over and celebrate it being gone? Sounds odd, but it may help you mentally prepare for life with out it.. kind of like the old mortgage-burning parties..
lol
well, it's a thought :)
celiac disease,
hypothyroidism for 20+ years
total colectomy with ileo rectal anastomosis 1/12
newly diagnosed with fibromyalgia

Doc~ "you don't understand, and ostomy bag is life altering"
Me~ "NO, you don't understand, an ostomy bag is a bag of crap you deal with. Life altering is not being alive to be with my family"

B'Dereh
Veteran Member


Date Joined Jun 2011
Total Posts : 1912
   Posted 3/23/2013 3:52 PM (GMT -6)   
It sounds like everyone is doing great, so I'm sending more cheer!
I had 20 bms per day and 2-3 at night just after my reversal. That was one year ago and things are now stabilized at around 5-6 per day and I can often sleep through the night till 6 or 7 in the morning.
A tip- I take 1-2 tablespoons of psyllium husk after every meas, in water or yoghurt or milk and get it down me before it starts to swell. Then I wait an hour before drinking. Separating food and liquid also reduces bms. The psyllium is great because it thickens and also helps emptying the pouch in one go.
The stoma funeral is a great idea. I'm all for celebrating every progress along the way. The stoma is actually not dead - it's just gone back inside to do its old job!

KCookie
Regular Member


Date Joined Nov 2012
Total Posts : 41
   Posted 3/24/2013 3:35 PM (GMT -6)   
Thank you all for the updates. It's good information to see how people are progressing (good and bad) as they recover. Thanks for taking the time to share.
Wife of UC Dx 2007
18 months of failed meds; no remission
Colectomy with temp ileo 2009
Parastomal Hernia 2012--causing SBO
J pouch/hernia fix early 2013???
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