Takedown tuesday, freaking out

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Regular Member

Date Joined Mar 2006
Total Posts : 66
   Posted 2/7/2009 9:59 AM (GMT -6)   
Well here I am. After three months with an illeostomy named tweeter I am going in for the reversal. This past Tuesday I went to my surgeon so he could take a look inside. Wow that was an experience. Not exactly fun if you know what I mean. Anyway, he liked the way everything looked so he told me we can get you in next week all we need to do is get your pouch ct scanned. So the next day there I was nervous as hell. They gave me the enema and did the tests. The doc said everything looked perfect, congratulations and good luck. So Tuesday is the day. I'm freaking out. I'm being told that this is nothing compared to the first surgery (removal of large intestine). I guess I'm just overwhelmed. I just got engaged and I feel this sense of doom like I'm not going to make it to my own wedding. I know it sounds crazy I just get inside my own head sometimes and lose it. Anyway any advice would be greatly appreciated. And thank you for listening to me.
I miss the waves... I miss the trails... I miss the snowy mountains and the rock walls I used to scale... I miss being on stage and escaping from reality... I miss feeling healthy... I miss feeling sane. I pray every day for one day out of seven just to feel invincible. That day will come. Thank you all for being here... in this small corner of the internet universe, you've been so much help... hope i've been the same.

Regular Member

Date Joined Jan 2009
Total Posts : 125
   Posted 2/7/2009 10:13 AM (GMT -6)   
good luck!! I'll be watching this, because i'm looking at getting mine reversed in March

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 2/7/2009 10:37 AM (GMT -6)   

The reversal is a simple painless procedure, at least for me it was.  However, the adaption of your new plumbing can be more frustrating.  Just recognize that this is normal and it may take time.  I measured my improvement (reduced frequency and spasms) in periods of 6 week increments not days.  Do expect some urgency and discomfort but do know it gets a better as time goes on.


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 2/7/2009 11:24 AM (GMT -6)   
I have a perm. ileo so I really can't give you any first hand experiences like suebear. As with any surgery, just keep your positive attitude in place and don't get discouraged. You will make it through this with flying colors - be patient with yourself.
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

Miss UK
Regular Member

Date Joined Oct 2007
Total Posts : 128
   Posted 2/7/2009 3:41 PM (GMT -6)   
Ooh you've nearly made it, just one more hurdle and your there.  Having read your bits at the bottom it sounds like you have a lot to look forward to again.  What did you used to do/do again on stage?  I hope very soon you will be feeling very healthy.  I've got my reversal coming up soon too so understand your fear.  All the best of luck!! :-)
36 year old single mum to a 2.5 year old son
Suspected Crohns when 10 years ago had a very painful rectal abscess
Diagnosed with Crohns desease properly 6 years ago
2008 developed fistula bowel perforated onto bladder resulting in temporary ileostomy
hopefully a reversal around March 2009.

Regular Member

Date Joined Oct 2008
Total Posts : 262
   Posted 2/7/2009 10:19 PM (GMT -6)   
All the best to you JrNY!!  I am excited for you.  I see my surgeon next week to find out if it's a go for my reversal as well.  Keep up posted as to how u r doing ok??  Good luck with everything!

Hysterectomy 1998
Diagnosed IBS 2000
Vaginal Prolapse Surgery 2001
3 Hernia Repairs, 2004
Repeat Vaginal Prolapse Surgery 2006 (the mesh from previous prolapse surgery had let go and fallen into my bowels)...
Removal of mesh from bowels (it was piercing holes all through my bowels and appendix and cecum, causing 2 fistulas and heavy bleeding vaginally and rectally)...mesh was removed, two pieces of large bowel removed and resectioned with a loop ileostomy. 2008
I have underlying connective tissue disorder (Ehlers Danloss Syndrome) which is the reason for the two failed surgeries)

Veteran Member

Date Joined Nov 2006
Total Posts : 552
   Posted 2/8/2009 2:21 AM (GMT -6)   

Bratcat's reversal was much different from her 1st surgery. It took under an hour. She was up and out of bed almost immediately. She loved walking the floor (no real pain). And she smiled almost immediately after surgery! Even the nurses saw a difference (she was on the same floor, same room, same bed).

She had about 2 weeks of butt burn. Mostly because she ate so little that we think alot had to do with the gastric juices in her system. Now it is only when she eats some foods (which she does but she knows what to expect).

Her recovery time at home was also much quicker. She was back at school 3 weeks after her surgery. She could have gone back after 2 weeks but it was Thanksgiving weekend and she figured why go to school for 2 days and have another 5 days off.

Good luck. Feel good.

--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp

Regular Member

Date Joined Jul 2007
Total Posts : 280
   Posted 2/9/2009 12:09 AM (GMT -6)   
You've come this far, you can do this!

I'm not going to say it was painless, but much easier to deal with than the other two I had. Some suggestions I have for you:

take your own toilet paper
get a squirt bottle (less wiping) but make sure you dry yourself well
get a diaper rash ointment (Calmoseptine is sold behind the pharmacy desk, Nupercainal is found near hemmy ointments)
ask your surgeon if you can chew gum after surgery--could help wake up bowels
bring favorite snack foods (I hate hospital foods)
WALK WALK WALK WALK WALK WALK as soon as you can and as much as you can (this helps keep down gas)

See ya tweeter!

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08

Miss UK
Regular Member

Date Joined Oct 2007
Total Posts : 128
   Posted 2/9/2009 5:48 AM (GMT -6)   
Hi Tbraz I hope you and JrNYC don't mind me asking but what sort of snack foods are you allowed to eat
after the operation? 
36 year old single mum to a 2.5 year old son
Suspected Crohns when 10 years ago had a very painful rectal abscess
Diagnosed with Crohns desease properly 6 years ago
2008 developed fistula bowel perforated onto bladder resulting in temporary ileostomy
hopefully a reversal around March 2009.

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 2/9/2009 7:27 AM (GMT -6)   
You've gotten some great answers already...you'll be fine, this surgery is SO much easier than any others you've had in the past:) Walk as soon as you can to get things moving and get home sooner:) There is nothing better than recovering AT HOME...take the time you need to recover and you'll be planning your wedding before you know it.

Regular Member

Date Joined Mar 2006
Total Posts : 66
   Posted 2/9/2009 12:42 PM (GMT -6)   
Thank you all for responding. Tomorrows the big day. I am very nervous but I knew this was coming and I get to see how life will be without colitis and the bag. I will try to write from the hospital to let you all know how I am doing. As for your question Miss UK about what I did on stage, I am a drummer and hope to get back into it this summer. Thank you so much for the responses.
Diagnosed with colitis 10 years ago
Polyp found with LGD June 2008
Step 1 October 21st 2008
Step 2 February 10th 2009

Veteran Member

Date Joined Jul 2007
Total Posts : 1956
   Posted 2/9/2009 1:39 PM (GMT -6)   
Back in 1999, I had a temporary colostomy. My first surgery was almost 5 hours long, extremely painful to recover from, I was out of it for at least 24 hours, almost 48. I didn't really become fully alert until they gave me 2 blood transfusions.

So like you I was really worried about what to expect for my takedown surgery. My doctor and all the nurses kept saying - oh a takedown is easy to recover from, piece of cake.

Compared to my first surgery, it was! I can remember the recovery room and elevator ride to my room. I remember none of this after my first surgery. First surgery - I was told I kept gripping my husband's hand and saying - severe pain, severe pain. I guess I didn't believe they were giving me pain meds.

So I was freaking out too. But I didn't need to be. I had pain though, once when I tried to fluff my pillow it gripped me. The nurse chuckled a little because here I thought I would have NO pain. From that moment on I knew to twist and turn slowly. But I was sitting up in a recliner by that afternoon, taking small walks out into the hall, longer walks as time went on.

My first hospital stay was 7 days.

Second 5. I think it was 5 because I faithfully did the breathing exercises and walked all the time. By the time I was discharged I was doing 2 full laps around the surgical floor. Slow, careful steps but putting one foot in front of the other. A kind nurse saw me one late evening asking if I was going for a record. I said - oh no, just want to feel better soon! She said - ah, you've had surgery before haven't you? Bingo!

But all that walking really did help me heal fast from surgery and got my bowels moving.

Now the flip side to this little story....once my bm's started, I was going all the time. The hospital TP was rough paper so I wished I had brought my own, a very soft quilted type TP. Buy the softest you can find! And bring it. I also wished I had packed a few of my trusty Stayfree ultra thin overnight maxi pads. They go way up in the back of your underwear. For minor drips and such. Years ago when I joined a colon cancer message board, men were wearing these pads too. Honest!

It might be too late for you to do this, but we told only 4 or 5 people I was having my colostomy reversed. People thought I still had it! Which turned out to be a God-send. I had very few phone calls, only from my children and husband. I knew when that phone rang it would be someone I'd want to talk with. So in a sense I snuck into the hospital and snuck back out. Even my neighbors were unaware I had more surgery. My house was ultra quiet too. Even though I appreciated meals being dropped off each time another kind neighbor would bring one after my first surgery, I had to do the polite chit chat for a while.

After my takedown I barely left my bathroom. But once I went on a low residue diet, I was able to even leave my home.
Marsky/Mary's story.....
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening

All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 2/9/2009 9:06 PM (GMT -6)   
Good luck tomorrow! I'll be thinking about you.
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)

Veteran Member

Date Joined Feb 2007
Total Posts : 788
   Posted 2/9/2009 10:23 PM (GMT -6)   
GOOD LUCK on your big day! so exciting.
I'll be praying for your smooth operation and a quick recovery!
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; 1/29/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

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

Regular Member

Date Joined Jul 2007
Total Posts : 280
   Posted 2/9/2009 10:23 PM (GMT -6)   
Another wish for all the best!

Pretzels, carmel rice cakes & gatorade were my snack of choice-as long as it's not spicy eyes

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08

Regular Member

Date Joined Sep 2008
Total Posts : 489
   Posted 2/11/2009 2:51 AM (GMT -6)   
Good luck on surgery but you will not need it.This surgery is so much easier then all of the others that I have had and most of the people on this forum that have had it report the same.You will have butt burn make sure you clean it well (wet wash rag helps)and keep it dry.as everyone says it will get better.For me It has been over 6 months and I still have diarrhea most of the time but I think everyone is different because they have lost different parts of the intestines and different lengths.Hope every thing go`s good for you and I will say a prayer for you.
Lost half of my small intestineJan.2008.Ilieostomy for 5 months then reverst in June 2008,Nerve damage to right leg,part of my right hip bone removed Jan. 2008,Cronic pain,hernia,infection in my back called discites,and depression.Gallbladder removed Nov,2008.Surgery to fuse L3 and L4 vertabra Dec. 31,2008.Mother to 9 kids 7 boys 2 girls and 1 stepson.4 grandsons,9 grandaughters.4 of my grandkids I inherited from my twin sister who passed away 6 1/2 years ago from a blood clot after surgery.God has given me my life back after I almost lost it.Even though its a painful and sometimes hard road to walk I take it one step at a time and give thanks to god for every step I take.

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