Reversal of ileostomy

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Midwest Phil
Regular Member


Date Joined Mar 2006
Total Posts : 43
   Posted 3/15/2006 7:57 AM (GMT -7)   
Hey Crissie,  Glad to hear things are going somewhat well for you, and I can understand the frustration with the bag.  I've had my ups and downs with them also and I dont care what they say, it does affect you emotionally and of course in the relationship department.  As for being reconnected, I am not going to even pretend to give you advice on that.  It is something you have to come to terms with along with sound advice from your doctor.  As for me, I had my reversal on Feburary 2nd and during that time they also took the rectum, so I guess that free's me up from colon cancer huh?  I have been off work since that time, and they said to expect 4-6 weeks off work.  I imagine if I really pushed it, I could go back to work either part time or light duty, but I have the sick days so I am going to use them.  Also, I am looking at doing the final take down in a week or two, so I am resting up for that.  Also dealing with a bit of "pouchitis" right now so I have to clear that up.  They tell me once the final take down is done expect 3-4 weeks to get your toilet habits somewhat controlled.  So I guess the bottom line is, anticipate 2 and a half months at least.  Hope that helps, and good luck on your decision.  Phil

QueenofCrohn's
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 3/15/2006 2:55 PM (GMT -7)   
I think having the reversal is a decision that you have to make for yourself. That said, I had my ostomy reversed on 2-27, and I am still dealing with the ramifications of surgery. I don't mean to scare you, but  I had rather unrealistic expectations of the surgery. It took a lot out of me, physically and emotionally. Here is my timeframe. I was in the hospital on Monday, surgery at 7 am, twilight time the rest of the day. Tues. I started drinking clear liquids, and had the catheter taken out. (it took me 7 hours to pee. performance anxiety.;)Wed., I met with my doc. and he took me off the morphine pump, sent me home with a RX for percocet.  First food Wed. night. First b.m. thursday. 2 weeks later I went out by myself for the first time. Tired easily. Now, my guts are trying to figure out how (and when) to work. There is no way I could work right now. I would plan on allocating a good bit of time after the surgery  getting used to your guts again. Just my 2 cents. Good luck! Beth

Crissie
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 3/16/2006 1:56 PM (GMT -7)   

Thank you so much for replying phil and Beth,

My appointmet with my Doctor is April 6th to talk to him about reversal. I dont understand though......Why do they need to take the rectum? Dont you need that to control .... uh ya know? What is the difference between the reversal and the final take down?

Crissie 


QueenofCrohn's
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 3/18/2006 7:47 PM (GMT -7)   
Hey Crissie,
I just want to let you know that I still have my rectum. I believe Phil has an internal pouch, which is why he wouldn't need a rectum anymore. As for me though, I am just like a normal person. I use the bathroom like I did before I had any surgeries done, rectum and all. I hope this clears things up. GOOD LUCK! Beth

Crissie
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 3/21/2006 2:47 PM (GMT -7)   
Beth,
 
Did you have a permanant ileostomy? Have you had any problems since you had your reversal? Ever since I found this site and saw that this was possible, I haven't been able to think of much else. I am worried that I am setting my self up though, I am so worried that my doctor is not going to be willing to do this procedure. Was it difficult to find someone to do it? Did anyone have a hard time getting your insurance to pay this procedure?
 
Crissie

RhondaG
New Member


Date Joined Mar 2006
Total Posts : 3
   Posted 3/21/2006 3:09 PM (GMT -7)   

Hi Crissie, welcome to this site. My mom is still not in total control since her reversal surgery on Jan 23. You must consider that mom's surgery was not because of crohn's and she had two bags, one for mucas. She was with the ileostomy for only 9 months. But also she is in her 70's. I think you would do well if you were in top physical shape before having surgery. The surgeon who performed the ostomy is the guy we got to reverse it. Her insurance covered it because it was alway a temporary thing. I know alot of this really does not apply to you, but may apply to someone else out there.                                                       I think Jean is getting ready for her surgery the end of this month or beginning of April. We haven't heard from the guy who is a paramedic, he had his done in December I believe. Seems like he went back to work in just a couple of weeks. Everyone is different.  - Rhonda                                                  

 


Crissie
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 3/21/2006 3:27 PM (GMT -7)   

 

I know how hard it is keeping track of one bag, Two? My goodness. She is blessed to have a daughter as caring as you are.

I was also wondering if any of my ostomy friends have ever experienced intestinal twisting? I have had it happen twice,  doctors kept treating me for CD when my intestine was actually twisting and causing the pain and vomiting. I actually spent most of 10 months in the hospital missdiagnosis... (since I had already been diagnosed with CD). I have titanium staples tapering intestines to abdominal wall.  I was wondering, If I had it reversed, would it still need to be tapered up?

Crissie


QueenofCrohn's
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 3/21/2006 4:17 PM (GMT -7)   
Hey Crissie,
I had a temp ileostomy for not quite 3 years (due to CD), then had the reversal Feb. 27. I had my gastro refer me to a colo-rectal surgeon to do the reversal. My insurance paid for it and up to 4 days of hospital time. The surgery wasn't too bad, but I am still getting used to my guts. My doc said the longer you have the ostomy, the longer it takes for your guts to get back to normal. Off to the bathroom! Beth

raven01
New Member


Date Joined Mar 2006
Total Posts : 1
   Posted 3/22/2006 6:35 PM (GMT -7)   
Hi, my name is Christy and I have used this site a few years back when I was going through a stem cell transplant for crohn's..(unsussessful I might add) and have since had an ilieostomy in october. I am getting ready to get the reversal done, and have done some research, but don't know completely what to expect. I find your accounts most helpful. I am hoping to start surgery in early april, I have been very displeased with my ostomy so far and I tried for 17 years to avoid it. I hope that it all works out in the end. I am a bit overwhelmed as of now, but I am sure I will have many questions in the near future. I am glad there is a place like this to share knowledge. My best to all,
Christy

QueenofCrohn's
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 3/22/2006 8:14 PM (GMT -7)   
Welcome Christy! tongue Glad to have you. Ask away! Beth

Crissie
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 3/23/2006 8:01 AM (GMT -7)   

 

Hi Christy,

Welcome back.


jjean
New Member


Date Joined Feb 2006
Total Posts : 16
   Posted 3/23/2006 3:32 PM (GMT -7)   
Hi Christy
 
I too am waiting for an reversal!!!!I'm have problems with circulation in my legs and until that is sorted out they will not do the reversal! @@&^%# This waiting game gets to be a bit much after awhile. I find this site most helpful too,  I'm sure you will too.   Take care  good luck     jean

Midwest Phil
Regular Member


Date Joined Mar 2006
Total Posts : 43
   Posted 4/4/2006 6:04 PM (GMT -7)   

Hi Folks,  Sorry it's been awhile since my last posting.  I've had a few ups and downs.  That and we sold our house and were moving, when I ended up back in the hospital with an infection.  Apparently I had a pocket of it above my bladder, that think it was from my last incision line from the February surgery.  Anyway, five day's later and a bunch of IV antibiotics and they sent me home.  I am scheduled next Wednesday for the Iodine push to look for leaks on my reversal, and if that is fine they will do the ileostomy take down on the 21st.  Looking forward to it and getting back to work hopefully in a couple weeks after.  While I was in the hospital they did do one iodine push to check for leaks.  That was not too comfortable.  They push it through the ileostomy and that along with some gas, it was uncomfortable.  Also some of the gas must have gotten into my chest because I had some chest pain.  Of course, with a stent from a previous heart attack, they didn't take any chances and moved me to Cardiac ICU for three days. 

That really stunk.  No phone to check on how the family was doing in the midst of the move.  But needless to say, I made it through and am looking forward to the take down.  I do have one question though.  Has anyone experience pain in the ball and heel area's of their feet possibly from any medication?  Mine are throbbing and it is hard to walk.  Almost like neuropathy and may be, but  the skin isn't hot to the touch or sensative.  It just feels like I am walking on Ice skates without the bottom of the shoe.  Anyway,  take care to all. 

Phil


sylvia
New Member


Date Joined Apr 2006
Total Posts : 1
   Posted 4/5/2006 5:12 PM (GMT -7)   
Hi, everyone, I am new to this site, I need help in finding a surgeon for my son's ileostomy reversal.  He has had it for only one yr.  He has Crohn's disease,  If someone could email me at bluetakamine@aol.com or even call me 304-366-1098.  My son is not taking the ileostomy well,  we have him seeing a psychiatrist weekly,  and he is so depressed we can't even get him to go out with friends or even to go to school.  He was diagnosed at 9 yrs old with Crohn's and has his surgery at age 15, I am happy to read that everyone has done so well with your reversal surgery,  are any of you on meds of any kind after the reversal?  I would appreciate any info you can give me.  I need a doctors name and address and phone asap.   God Bless You All 

Midwest Phil
Regular Member


Date Joined Mar 2006
Total Posts : 43
   Posted 4/24/2006 1:31 AM (GMT -7)   
Greetings All,  Just wanted to update you on how I am doing.  Had my ileostomy take down on April 21st in the afternoon.  The surgery went very well and that evening I was awake (in and out) and just rested.  They kept me on ice chips all night and most of Saturday the 22nd.  Saturday morning I started passing through my bottom and continued all day, off and on.  I got some Jello for dinner, but didn't feel like eating or drinking.  Just wasn't there yet.  Good thing.  Saturday night was hell night.  I was almost constantly on the toilet, and for one session I was on there for 45 minutes.  Everytime I would try to stand up, another round would hit.  Felt like a fountain.  Then I started having hot flashes while on the toilet and thought I was going to vomit and pass out.  Fortunately, since there was nothing in my stomach, I just dry heaved and eventually made it back to bed.
 
Of course you all know what it is like trying to sleep in the hospital but there were a couple times I actually got in a 2 hour nap.  Anyway, finally by Sunday morning, things had calmed down a bit and usually only when I got up to move to the chair or anywhere did it trigger a response from the bowels.  Sunday afternoon also brought relief as they put me on a soft food diet and I got to go home about 4 P.M.  Somehow it's alot nicer doing your business on your own toilet.  Soaked a few times in a warm bath (butt burn) and applied cream.  Also I have started using glycerin pads (Tucks, but generic) with Witch Hazel to cool the area, then applying creme.
 
I couldn't stand it anymore about 7 so I took a couple Immodiums and started eating bulk up foods, i.e. bread, PB & J sandwich, etc.  Took a Darvocet for some pain and slept from 9:00 P.M. until 11:45.  Woke up to empty, back to sleep for another 2 hours then up to empty again.  Bottom line is with the exception of Hell Night, things are going well.  Very little pain (more discomfort than anything), and here it is 2 A.M. and I am up for the day.  I have decided mind over matter and holding it as long as possible before emptying.  Seems to be working, but I know I'll also have a couple bad days ahead no doubt.  Still, I don't regret it.  I just keep reaching down to check my bag that isn't there.  Lol.  Guess I'll get over that too.  Many thanks to all that have written before, and I'll keep you updated.  You're words were/are encourage to many of us. 
 
Phil

Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 4/24/2006 11:59 AM (GMT -7)   
Phil,
I remember doing the same thing, checking the pouch that wasn't there anymore. Even I was afraid to give away my ostomy supplies, as if something bad was going to happen and I'd end up with it again. I've figured out that the more diarrhea you have, the more burning in the butt you get. And that what you eat decides if you get diarrhea. So, my new goal in life is diarrhea prevention. There is a very thin line between our "normal" and diarrhea, though. A food/stool log helps.

I'm so glad that you're doing okay and are on the road to recovery. It's nice to "put it all behind you," isn't it?

My take down surgery was 2/6/06, so I'm a couple months ahead of you. If I can help with questions, let me know.

Take care.
Cathy

Midwest Phil
Regular Member


Date Joined Mar 2006
Total Posts : 43
   Posted 4/24/2006 4:11 PM (GMT -7)   
Thanks Cathy, I am excited that it is going well, and I know the feeling on the eating.  I have been trying to concentrate on the bulk things like rice, breads and banana's and that seems to help.  Unfortunately, the stool has bulked up but the butt burn is still there.  It is getting better though.  I know it is hard to believe, but I remembered a remedy we used on our kids when they were babies and had diaper rash and I have tried it with success.  Of course, for the gruesome details, you clean up as normal then I use the Witch Hazel pad to clean better, then put on some Barbasol Beard Buster brushless shave creme.  It comes in a tube.  I forgot how well that worked on the kids and I gave it a try.  Cools things right down and heals it quicker I think than some of the other ointments. Has Lanolin in it.
 
One question I do have however, is do you feel like you have to have a movement but you don't go or only go a little?  If so, about how long does that feeling last?  Do you know if it is just swelling from the operation?  Just curious.  Glad to hear you are progressing along well.  Did you're Doctor put you on any Immodium?  I notice that some of the other posters have recommended that and I took some this morning.  With the U/C and/or the Ileostomy, mornings were my worst so if I could get it under control in the morning, I was pretty good the rest of the day.  I think that helped because even with the bag, I was at least 4 immodiums a day to try to control it.  Two and I'm good now. 
 
I ended up going over to where the home health nurse who first helped me out with all my ostomy supplies, and had her own business supplying.  Typically, the insurance company wouldn't use her because she was only a mile from my house and they contracted with a big company back East, even though the prices were the same.  I took all my supplies over to her and told her to use them up for folks that don't have insurance or whose insurance hasn't kicked in yet.  I know she will.  She came to my rescue a couple of times free of charge.  I tell you, a good Ostomy nurse is worth their weight in gold. 
 
Thanks again Cathy, and keep us updated on how you are doing. 
 
Phil

Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 4/24/2006 5:46 PM (GMT -7)   
Phil,
For a while I kept feeling like I had to go all the time. I'd go and sit, but varied successes. I think some of it had to do with swelling, because that feeling has gone away for the most part. I have used the witch hazel and zinc oxide cream, but I will try the barbasol. When I get too much diarrhea in a row, or I use too much force, I get the butt burn!!! I do find clean up a tad bit more difficult due to the different texture of the stool (I had colonic inertia-constipation, before my surgeries.) I gone to using Prep H towelettes, like tucks but bigger and flushable. Lets just say, I'm glad we have good plumbing.

Gotta get back to work.
Take care.
CAthy

Midwest Phil
Regular Member


Date Joined Mar 2006
Total Posts : 43
   Posted 4/25/2006 6:42 AM (GMT -7)   
Thanks Cathy,  I'll have to try the Prep H. towelettes.  Anything that is flushable would be good.  Hope the Barbasol works for you.  I understand the texture issue. I moved from "free flowing" to thick but not solid.  Of course, after 15 years of U/C, I am having to learn how to "clean-up" that type all over again.  I am going to try to keep track of how many times I actually go today.  It seems I go alot, but only with minimal results, so I am going to work on holding it for more "output" so to speak. 
 
Now alot of folks who read all this would probably think how can people talk about this.  Well, like I told one of the nurses who was so worried about my minimal "exposure" so to speak during various tests and procedures,  "Honey, after what I've been through, I lost any dignity when it comes to that about 8 months ago."  Ha ha.  Hang in there.
 
Phil

Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 4/25/2006 11:29 AM (GMT -7)   
Phil,
You should try pregnancy, labor and delivery! LOL
Cathy

Midwest Phil
Regular Member


Date Joined Mar 2006
Total Posts : 43
   Posted 4/25/2006 5:47 PM (GMT -7)   
That's true.  I guess you really do "open yourself up" for the world.  Ha ha.  Phil

gbrux
Regular Member


Date Joined Oct 2005
Total Posts : 63
   Posted 4/27/2006 8:11 AM (GMT -7)   
Hi everyone - been away again - actually managed a holiday to Florida from grey Europe! Keys are wonderful and was so nice to do 'normal' things and not be scared to leave the bathroom. My next op is scheduled for the end of June so hoping it will go ok but good to hear all the things bad as well as good to be prepared.

Answer for Midwst Phil - I was so pleased to read your mail about your heels! Mine have been killing me especially when I have been sitting or lying even for a short time. Goes away the more you walk but comes right back when you stop. I was on highish doses of Pred for 18 months, cyclosporine, remicade, 6MP you name it. Now off everything (no wonder I am feeling better) and without most of my colon. The doc said it could be caused by the high doses of antibiotic I had in February or even just another aspect of the disease (Ulcerative Colitis).

(I have 2 stomas, a sigmoid and and ileostomy - they will connect me back up at the end of June and create a J pouch, at the same time cutting the rest of the colon (which is still bleeding occasionally from the recturm/sigmoid stoma) - seems like they do things very differently in Belgium to the US)
gillian
 


Midwest Phil
Regular Member


Date Joined Mar 2006
Total Posts : 43
   Posted 4/27/2006 1:56 PM (GMT -7)   

Hi gbrux and everyone,  Just checking in.  gbrux, the pain that I am having in my feet is in my right heel, and also under my second toe and into the ball of my left foot.  It was strange.  I went into the hospital on the 21st for my take down and was in there until Sunday.  I noticed the pain had really subsided and swelling went down while I was in the hospital.  I don't know if this is going to be tied to a diet issue or what, since I was mostly on liquids and ice chips for about three days.  As for the being off the medication, I can agree with that how well you must feel.  The 6mp, Prednisone,  I did it all too.  I think ones system can just take so much garbage before it fights back.  I've been off all that since October, and the only thing I am on now is Loepressor for a heart attack I had in September. 

Anyway as for my progress, I am managing to get along pretty well.  Still a mild case of the butt burn but it is clearing up a bit.  I have been taking some immodium to slow down the system and help form along with eating bulking foods.  Monday night I was up three times,  Tuesday only once and twice last night, so all in all, I am pleased for where I am.  Daytime is a crap shoot.  Pardon the pun.  Part of the day I am rockin' and then it's musical toilets in the house.  Just when you think you're done you go to give a standing ovation and have to sit right back down again.  I am sure that this will work out though.  Unfortunately, right now I can't have one of my favorite foods, sautee'd mushrooms.  YOUCH !  Those burned.

Going back to the Doc tomorrow though, as I am a bit concerned about the incision.  It's probably the strangest suturing I've seen, maybe someone else has experienced it and it is normal.  It looks like a telfa pad folded in half and placed just in between the edges of the incision, then two sutures about mid-way to hold it closed.  I'll ask about it tomorrow, but it almost looks like they are trying to prevent the outside from healing faster than the inside.  Who knows.  Well going to go sit in a warm tub and soak my troubles.  Best to all.


AVP
New Member


Date Joined May 2006
Total Posts : 3
   Posted 5/8/2006 7:27 PM (GMT -7)   
New member.
 
I suffered with UC for almost 9 years.  I had the IAP procedure in early February, 2006.  My ileostomy reversal is in a few days.  I'm nervous but looking forward to getting rid of the external pouch.
 
I was on prednisone for a long time prior to the IAP with obvious side effects (weight gain being the most noted).  Since the IAP I've lost a lot of weight (was 165 and now I'm 130 lbs).
 
I've seen many posts which refer to weight gain between the IAP and takedown.  Has anyone experienced weight loss during the process?  And if so, did you gain it back once the takedown was completed?
 
Thanks and best wishes to all.
 
AVP

Midwest Phil
Regular Member


Date Joined Mar 2006
Total Posts : 43
   Posted 5/9/2006 12:10 AM (GMT -7)   

Hi AVP and welcome.  As for the weight gain, mine was up and down over the years with the off and on use of Prednisone.  It was really hard to track.  As far as having the ileostomy take down and recovery, I am now 2.5 weeks post op from the take down and haven't really gained alot of weight.  Mostly, I lost mine during the initial subtotal colectomy in October, 30 pounds and never really regained it.  I think the most I gained was 10, then I would have a surgery again and lose that. 

Hope that helps and hope all goes well with your surgery.  Take care.  Phil

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