before and after....life with a bag vs. life on the pot

I am happier and better off after having my ostomy surgery
7
Yes - 33.3%
0
No - 0.0%
6
kind of, but life is still pretty tough - 28.6%
0
oops....my stoma just farted! - 0.0%
0
i should have never done it - 0.0%
8
it was without a question, one of the best choices i have ever made - 38.1%

 
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Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 9/7/2007 4:33 PM (GMT -6)   
so folks...i read another post from someone considering surgery....just thought I would open up this for anyone to say how they feel better or worse after having an ostomy?

i would love to also hear from anyone who actually "healed" during their temporary ileostomy, and if so, how did you feel after the reversal. did you have the surgery because of Crohn's or colitis or what? just curious....

ok.....let's see what ya'll think
"All we need is love....love is all we need"


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/7/2007 7:10 PM (GMT -6)   
Before: very sick and sad   mad  
 
After: very healthy and happy  tongue
 
Need I say more?
 
 

taurus
Regular Member


Date Joined Jul 2007
Total Posts : 65
   Posted 9/7/2007 8:02 PM (GMT -6)   
I'm having my reversal surgery September 13th. 6 more days to go.

I got my ileostomy because of Hirschsprungs Disease. I had a subtotal colectomy and the day I was supposed to leave the hospital (7 days after the colectomy) I had complications. So they took me to surgery that day and I got the ileostomy.

Up until the complications things were going good. I started having bowel movements the day after the first surgery. I was thrilled because the sooner you have bm's the sooner you can go home. It was coming out pretty thick and I was only going 4 times a day. I had read that you could have watery stools and go 20-30 times a day. The watery stools must really be painful after awhile.

I am PRAYING that things go easy for me this time around. If I'm going to have watery stools I would much rather keep my ileostomy. At least with the ileostomy I feel fantastic.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/7/2007 9:42 PM (GMT -6)   
Taurus,
I will keep you in prayer that your surgery goes well and that you will be pleased with the results.
Cecilia
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 9/8/2007 12:23 AM (GMT -6)   
Hey Glad -  I just voted and was wondering if there is a way to tell how many people have actually voted on your poll?  Just curious
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 9/8/2007 12:24 AM (GMT -6)   

NEVER mind ----   I see it now.  Blonde moment!

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 9/9/2007 4:11 PM (GMT -6)   
I had my temp. to heal my colon but it did not work (crohns) but I KNOW there are success stories out there!!! I just wish I was one of them! I miss that extra hole!! Not to mention being a woman I'm supposed to cracked front to back!! Now there is just the illusion of a butt-crack! I never thought I'd miss those things!!

justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 9/9/2007 4:11 PM (GMT -6)   
PS--good to see you back--your too funny not to be on here!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/9/2007 4:19 PM (GMT -6)   
i thoguth i already replied to this, i just voted though, lol
I think it's alot better than being sick all the time. It's not better than i was before i got sick of course, but that was so long ago i can barely remember what it was like.
It's not my fav thing in the world, but it's 10,000 times better than being sick and having to take all those meds and junk so i am gald i did it, wish i had doen it sooner

dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 9/9/2007 5:31 PM (GMT -6)   
I had mine reversed June 20th. I now have daily pain again especially after eating, I have lots 4 pounds in the last few weeks without trying. Since my reversal I have 3-10 BMs a day mostly D. My ileum perforated in Feb due to 20 yrs with Crohn's, mult complications and the stoma never healed right causing feces to leak into my abdominal cavity causing abscesses and peritonitis. I am only 4' 9.5" but have not weighed under 100 pounds in 10 yrs. I am trying to contact my GI to put me on questran to help with my D issues post op I am missing half of my colon and 12 inches of my terminal ileum. I find I have less options now with food than before unless I really want to spend my day on the toilet.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1243
   Posted 9/10/2007 3:39 AM (GMT -6)   
It was, without doubt, the best decision my parents ever made for me. I have never regretted having surgery, it gave me my life back.
I have had an ileostomy for 31 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 9/10/2007 12:28 PM (GMT -6)   
dragonfly.....well, i hope you start to feel better....how frustrating it must be for you now?

the more i read about reversals the scarier the idea becomes....but then again, i would hate to have a colectomy and then wish i hadn't...

jenjenjen.....not to be too forward or graphic, but now i am curious as to what someone with a total colectomy looks like after they are all "sewed up"...so to speak

i remember a post earlier about this, but i gotta ask again? when they take out your colon and rectum, do they sew the anus shut?
"All we need is love....love is all we need"


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 9/10/2007 1:18 PM (GMT -6)   
Yeah, it looks like I have a crack (I kinda do) but it's very shallow. You can't tell when I'm standing in the buff that there is no hole. It looks like a normal butt. It is fine now but when I was still healing I felt like someone taped my butt cheeks together. It drove me friggin' crazy! I've not tried thong underwear since the surgery--I'm afraid it won't stay in place! LOL! I had very bad disease near my anus so it had to go. However, if my sigmoid and below were not affected I would have opted for another option (so I wouldn't be bagged). There are other "different" things about being sewn up but I don't know how much info you want. Ask away-I'm not bashful!

dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 9/10/2007 4:12 PM (GMT -6)   
I am just medicallu unlucky and lucky I guess. Unlucky since I seem to have complications with everything. My first issue with constipation started when I was 5 just after getting over the chicken pox. My joints started 1 yr before I was Dx with CD. I had an inguinal hernia operation when I was 8 (spring before CD Dx). Cd diagnosed in 87 almost died in the hospital but luckily no Sx was needed at the time. Due to Imuran my gall bladder nearly burst but was giving me symptoms of menengitis (I was in college at the time) I missed 1 month of my Sr year and made everything up and still graduated on time. I got married 2 months out of college and it was an abusiove relationship. I met Eric online (he is my current husband) he is absolutely wodnerful, he gets grossed out by medical stuff but was there everyday while I was in the hospital this past year. Our 2nd anniv is coming up next month :)

I am lucky since I had great durgeons and I am alive, I find I still have to take pain meds almost daily. I got a job offer today soI moved up my appt with my surgeon to this Wed. I hope he can help me out with the pain I still have, it may be more adhesions. My GI called in questran for me today and I will pick that up tomorrow and see how that works for me. My biggest concern at my new job is bathroom, I am one who could never have a BM except at my house, my parents, or grandparents. Now I cant help but to go other places so my biggest fear is the stench that comes out of me. I cant drink peroxide to make it better and no M9 drops either. I need tips for that now that I dont have a bag and cannot mask the odor with those items
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 9/10/2007 5:36 PM (GMT -6)   
dragonfly.....not to simplify your concern...but everyone's sh@t stinks.......i would try not to worry about it

i am not sure i get why a lot of people on this site are more concerned with the smell after "going to the bathroom", before or after surgery. Everyone smells differently, and they smell before or after surgery.....from a bag or from the real deal....

just put a can of air freshener under the toilet at work.....
"All we need is love....love is all we need"


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/10/2007 8:09 PM (GMT -6)   
Dragonfly,
Congrats on your new job, and Happy Anniversary!! Hopefully, things will keep getting better for you. I agree with Glad to keep a can of air freshener in the bathroom at work, because everyone will need it!

Glad,
You asked about what happens when they remove your rectum. I thought they sewed it up, too, but they actually leave the wound open to heal slowly from the inside out, so it doesn't get infected.

I had to pack the hole with saline-filled gauze twice a day until it closed up. The pieces of gauze kept getting smaller and smaller. It didn't hurt while it was healing. I was able to sit right away and was out driving 2 weeks after surgery.

justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 9/10/2007 9:35 PM (GMT -6)   
flchurchlady--is that the norm surgery-wise? I was sewed up. No packing, open wounds or anything. I think my rear stitches were all disolvable. I definitely could not sit down. However, I blame my "pain management" doc. She obviously did not understand the words pain management. Somehow in her mind it translated to "torture endlessly." I'm still working on my anger over that one!!

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1243
   Posted 9/10/2007 10:35 PM (GMT -6)   
Surgeons can do it either way. Some prefer to sew everything up (like they did to me), others prefer to lave it open to heal. Sewing up seems to heal faster, however leaving it open to heal leaves less chance of infection.
I have had an ileostomy for 31 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/11/2007 5:57 PM (GMT -6)   
Jen,
I didn't know I had an option, to sew or not to sew, so I ended up with a big hole. Had I been given a choice, I would have asked my surgeon to sew me up.
Cecilia

Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 9/12/2007 3:53 PM (GMT -6)   
I received a temporary Ileostomy on July 23. My doctor told me I would need it for about 3 months, so I'm looking to have it reversed the first week of November. Due to having a baby 21 years ago, the nerve damage and muscle control became worse over time. My doctor thought he could perform rectal surgery to repair me with an Ileostomy. This was on June 21. On June 27, I went in for more surgery because he couldn't figure out why I was having so much pain during my dressing changes and exams. It was unbarable. He found that I had an abcess/infection. One night after the second surgery, I started to go septic. It was the scariest time of my life. I spent two weeks in the hospital. My husband was going nuts. That was the longest time we've spent apart. By July 23, I was back in the hospital. Everything had fallen apart from the infection and contamination. The doctor decided to give me an Ileostomy. He was always planning to give me a colostomy. I never heard about an Ileostomy until that day in the hospital.

My Ileostomy has definately allowed me to heal down below. I don't think I would have been able to without it. Unfortunately, I am allergic to most of the products. I have a severe case of Dermatitus and Yeast Infection.

Does anyone know of any hypo-allergenic products out there - wafers, pouches? I'm using the Eakin Seals which work great. My nurse gave me an Edgepark Catalog, but I order through Sterling Medical (insurance preferred).

Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 9/12/2007 3:56 PM (GMT -6)   
In regards to my previous post, I meant repair me "without" an Ileostomy.

JWish
New Member


Date Joined Sep 2007
Total Posts : 1
   Posted 9/16/2007 1:18 PM (GMT -6)   
Hi everyone...I'm new at this, so here goes. I myself didn't have a choice. It was a life or death thing. Diverticulitis- perferated bowel. Then scar tissue blocked me again,causing them to take another section out. Seems the doctors are reluctant to try to resection me. So I've just been living with it. Not really what I wanted,but it could be worse.
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