Ilesotomy reversal

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LesaJT
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 1/6/2009 11:06 AM (GMT -6)   
Hi all. I will be having my ileostomy reversed on the 19th of Jan (13 days). I am so excited but of course nervous. I will be glad to be done with all the troubles it has caused. My wafer itches and burns and gets sore and raw from yeast infections. So will be nice to have this fixed. Doc says about a week inthe hosptial since I have has such a hard time over the last year with complications. cool I am concerned about the pain (have trouble taking opiates) and I hate getting IVs and worry about how many times a day I will need to have BMs. Bit I am looking forward to getting this over with. It has been a long 6 months.

Comber
Regular Member


Date Joined Jan 2009
Total Posts : 40
   Posted 1/6/2009 2:47 PM (GMT -6)   
Hello! I am having my ileostomy takedown on January 8th and i am so excited but so scared!! I hear all these things about people not being able to eat anything, not being able to sleep, having 20 BM a day and i feel like with my ileostomy i can basically eat what i want, empty it when needed and sleep a full 8 hours every night without having to wake up! Although i am only 23 years old, can't wear the clothes i want and after a year of having my ileostomy i still am constantly looking at it and watching it. I am so close to my takedown and feel like backing out and just sticking with the ileostomy....

2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 1/6/2009 2:58 PM (GMT -6)   
I know exactly how you feel, I just had my reversal on the 15th of December. You probably don't want to hear my story though because I had some complications and I'm still in the hospital. I just wanted to write and let you know that the feelings you are having are normal. Even with all the complications I've had I'm glad I had the reversal. I did not want to live with that bag forever! I'm just hoping they get my complications solved and I don't end up with another bag because if I do there is no guarantee it would be temporary again. I just want all this to be over with and I'm sure you do to.

Good luck to both of you!! Please keep writing and let us know how you are doing, and anytime you need to laugh or cry we are here for you!
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Total Colectomy - September 22, 2008
Take Down Surgery Scheduled - December 15, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 1/6/2009 3:29 PM (GMT -6)   
My take down was this past August, and I had a great experience. Not everyone has lots of problems. I was sore from the surgery, of course, but I knew how to deal with that from my previous surgeries. My bowels woke up about two days after takedown. I could tell I had to go, I got up, got in the bathroom, and went. Not really urgent. And things only got easier from there. I never got buttburn. A little bit itchy, but no pain. I never have much urgency, I go all day at work, no problem, and I sleep through the night most every night. I get up in the morning and can take a shower and all of that before I go even. Some days I go more, up to 8 times, but it's just because if I want to let it out, I can almost every time I pee. Sometimes I choose to, sometimes I'm in a hurry and choose not to. I had one partial blockage, that was uncomfortable, I got to the point of vomiting, but that unplugged me, and I was fine afterwards. I'm now eating salads, raw veggies, popcorn...everything I could never eat before, even with my ileostomy.

So, I just wanted to give you a success story!!! I love my jpouch! You may or may not have complications, I was just a lucky one and didn't, and you hear many more stories of harder recoveries on boards, because those are the people here, looking for advice.

Good luck! I hope all goes well!
If at first you do not succeed, then skydiving is surely not meant for you.


Jo - UC, total colectomy and ileostomy on August 24, 2007. Step 2 & ileostomy switched to left side - May 27, 2008, and take down August 8, 2008. Gallbladder removed December 5, 2008. LIFE IS GOOD.


amy476
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 1/7/2009 10:09 AM (GMT -6)   
Love hearing the good stories! Especially if you had problems  in the past. We are not of course at the stage, but will be good to know when we do.
Good luck with surgery, and keep us posted!
Amy
Amy,
taking care of daughter w/ Crohn's since 12-04
MD's switched her diagnosis to Ulcerative Colitis 10-08
her medications: Remicade, imuran, benyl, levisin, humara, TPN (in hospital and home) home iv antibiotics
Multiple admissions for flares, sepsis
2 ports inserted/removed
Total Colectomy 11-11-08
revision of anastomosis 12-08
Temporary ileostomy 1-2-09
 
Thanks for all the support!


Roddiesgirl
Regular Member


Date Joined Oct 2008
Total Posts : 262
   Posted 1/7/2009 7:49 PM (GMT -6)   
Best of luck with your surgery....You must be so happy/scared/excited/nervous...etc etc...!! Let us know how you are doing k?...Cheryl

hendersonjames
Regular Member


Date Joined Sep 2005
Total Posts : 89
   Posted 1/8/2009 6:58 PM (GMT -6)   

Had my reveral in Oct.  Thought I'd be rid of the reccurrent yeast infections but I still have problems which I blame on the adhesive tape over my healing stoma site.  (Had a big hole that's filled in but hasn't skinned over.)  Hope they go away when the tape does. 

It was so great to have a soak in the tub.  I did showers for nine months.  I don't understand how people can go swimming.  I was finally able to roll on my stomach in bed several weeks ago which is also a great thing.

I'm still getting up usually twice in the night, but I had to do this with the bag for fear of it getting overfilled.

I go about 10 times a day.  I was a little slow in the hospital to "wake up" .  At first, I had to use the bedside commode because it would take too long to disconnect from the IV and make it to the toilet.  Not, because of an accident, but the ability to move my bowels would pass.

 

 


LesaJT
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 1/11/2009 5:17 PM (GMT -6)   
7 more days for me. I cannot wait to sleep on my stomach and get rid of this bag. I am getting more nervous, worrying about the IVs, blood work, shots, craps, etc. Ha! Maybe some day I will be able to work. Too sick right now. Have a happy week.
Lesa

hendersonjames
Regular Member


Date Joined Sep 2005
Total Posts : 89
   Posted 1/11/2009 9:03 PM (GMT -6)   
Take a roll of CHARMIN with lotion toilet paper to the hospital.  I had my family bring some after I started going and got irritated from the frequent bowel movements.  It was much better than the hospital supplied.

heathersmom
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/11/2009 11:17 PM (GMT -6)   
Hi all I am new to this forum, I really wish I would have discovered it this past summer when my daughter was given her ileostomy, sure would have been helpful! Anyways, I do have a question, first some history. My daughter and I were in a car accident on June 15th. For 8 weeks following she had lots of injuries for which she was treated (and yes she was wearing a seatbelt), after 8 weeks she was still very sick so the doctors performed exploratory surgery and found large holes in her intestines and her rectum torn almost in half. She was given an ileostomy in August. The good news is that is was reversed on October 14th. She was only 9 at the time and really recovered well. She went back to school exactly 7 days after the reversal. My question is now, she is having alot of bowel movements each day and most of them "hit" her quickly, so she is always literally running to the bathroom. I have read some previous posts about this and it appears to be somewhat normal or expected. So I guess what I am trying to find out will the number of bowel movements each day slow down? Or is this something she will just have to deal with for the rest of her life? Thanks for any help you all can give me.

LesaJT
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 1/17/2009 9:53 AM (GMT -6)   
two more days...So sick of this bag. Woke up again at 6 am leaking all over my bed...Wafer came unglued. Glad to get this over with.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/18/2009 9:50 AM (GMT -6)   
heathersmom ---- I just realized that you had "tagged" along to LesaJT's post, so I think others may have missed it too. Which would be why you haven't gotten a response yet. Please try to post your question as a New Topic so it can be read.

I have a permanent ileostomy, so I'm not much help in answering your questions, but there are lots of others on this forum that will be able to answer you.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 1/18/2009 10:57 AM (GMT -6)   
I HAD MY REVERSAL OF MY ILEOSTOMY IN OCT.  MY BOWELS WOKE UP THE NEXT DAY.  I DID HAVE LOOSE WATERY BOWEL MOVEMENTS FOR TWO DAYS BUT THEN I WAS ABLE TO CONTROL IT BETTER.  IT WAS NOT SO URGENT.  I DID NOT HAVE BUTT BURN OR ITCHING OR ANYTHING LIKE THAT.  FOR THE FIRST FEW DAYS I WOULD WIPE WITH EITHER WIPES OR SOME SORT OF SOFT TP BUT I'M SURE YOU'LL BE FINE.  IT HAS BEEN  THREE MONTHS SINCE MY REVERSAL AND EVERYTHING IS GOOD.   I GO about TWO TO FOUR TIMES A DAY SOMETIMES ON OTHER DAYS THERE WILL BE MORE DEPENDING ON WHAT I EAT BUT ON A WHOLE IT'S SO MUCH BETTER THAN BEFORE.  AND THANK GOD I GOT RID OF THAT BAG.  IT WAS ITCHY AND WOULD BURN UNDER THE WAFER.  HOPE TO GOD I NEVER NEED THAT THING AGAIN.  GOOD LUCK TO YOU.  LET US KNOW HOW IT GOES.

LesaJT
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 1/29/2009 12:48 PM (GMT -6)   
Hi all! I had my reversal done Jan. 19; about a week and a half ago. So glad. I  tried to roll on my stomache but hurts too much. I am still in a lot of pain. Taking Tramadol 2 tablets 3-4 ties a day and tylenol. My colon woke up that same evening. I ask my doc the next morning what will it take to get me out of here? He said eat and get off the pain pump. I did and was out the next day. He wanted me to stay 3-7 days. No way I could do that. I hate hospitals. I have been either inthe hospital or in bed off and on the the past 6months. I was inh the hospital about 2 1/2 months. This time was a little bette since it was only 2 nights. I got the staples out Tuesday. I hope to get off the Cumadin in 2-3 weeks. I eart anything I want. But have a hard time with gas and digestion issues. But love to eat so its worth it. I got so thin and malnurished while in the hospital soglad to eat and regain my strenghth. Still going to be awhile before I can work. Doc says at least 6 more months. I have had many complications and lots lof meds. A little tired of sitting at home. i know it has only been over one week so I will wait it out. SSA turned down my request for disability payments so I appealed. Glad my husband can help pay the bills. This is not easy for me. Well, just thought I would gice an up date.
  

Miss UK
Regular Member


Date Joined Oct 2007
Total Posts : 128
   Posted 1/29/2009 3:54 PM (GMT -6)   
Oh wow LesaJT it sounds like you are doing really well! I hope it continues and you improve fast and aren't in any pain anymore.  Could I ask what is the pain like? is it just when you move, or go to the toilet? or all the time? (another fearful reversal candidate here :-) ).  I can't believe you were out in 2 days, surely thats a record, well done.
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.


LesaJT
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 1/29/2009 4:25 PM (GMT -6)   
I have all kinds of pain. Gas, fullness, sore site, sore intestines, etc. My pain level is usally 2-4 and sometimes 7-8. Ice helps to the belly. I feel best when I just lay still. The pain is not terrible, but uncomfortable.When I sleep I am fine. One night I woke up a coiupe times and took pain meds. I cannot take opitate or codienes so Tramadol is the best they can do. But last couple sugeries I threw up from all of it and could not get any pain releif. That was terrible. Thank God for the pain pump. If a person can stand to stick around the hosptial it is great, every 10 minutes....push the button. I am taking prune jiuce three times a day to keep things moving. I am so used to having empty small intestines. I am also very tired and exhausted all the time. But I have been sick and almost died this summer when all this started so people  keep telling me to relax and rest. I feel a little guilty. I feel I should be well and working. But not happening. So I rest and watch tv and do e amil all day and if I feel like it I might throw in some laundry. I have been off work for 6 months sick and in and out of the hospital and had 5 surgeries. So Hey..I am alive and here and HOME wwith my dogs and husband. Life is good..God Is Good.

Life?
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/29/2009 10:10 PM (GMT -6)   
Hi,
  I am having the reversal the 11th of February, and I was so very excited until I read all the difficulties people have after the reversal.  I have coped with the illeostomy, and question how much does one have to cope with?  Anyways, I am planning to be back to work within two weeks after the surgery, even if I need to wear a depends.  Is this possible? 
I had such high hopes but now I feel myself lossing all hope, and all strength.  How to cope?
Take Care,
Life?

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/30/2009 6:52 AM (GMT -6)   
Life?--welcome to the forum! Don't get scared...EVERYONE IS DIFFERENT...I had the easiest time with a reversal I had many years ago. Three days in the hospital, home for three weeks and then back to work!!!

The recovery is usually pretty tame compared to what you've probably gone through before. The hardest part is getting your intestine to work properly again. Just remember to eat softer foods until things are back to normal.

BTW You may want to post a new topic to get more answers to your question! Keep us posted;)

LesaJT
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 1/30/2009 9:57 AM (GMT -6)   
Hi Life?
I did not mean to scare you. It was easier this time for surgery then what I have been through already with othee surgeries I have had. I am day 12 after the surgery and I will probably not need any more meds for pain. The pain is mild to moderate. I think it is better to now have the bag gone, but everyone is different. When I had the ileostomy done they put me in ICU and I was in a loot of pain then. Nother like that this time. I cannot work for a while due to other problems.

leahbea
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/1/2009 10:45 AM (GMT -6)   
hi! im new here
im 16 years old and was diagnosed with ulcerative colitis 6 years ago. AFter many years of fighting with steriods, remicade and every kind of treatment my body started to shut donw. In febuary they rushed me in for a sub total colectomy with an ileostoy. i woke up colitis free. in april of the same year they removed my rectum and in july of 08 they reversed my ileostomy. I am in no pain in my stomach however and having a horrible time going to the bathroom. the doctors said because i dont have a colon i cant absorb the acids and thats why it burns so bad to go to the bathrrom. I have extremly senstive skin and my anuss is complety burnt and irritated with what the doctor said was a fungus. she put me on an antibiotic which helped but for only about a week. she said it was no safe to perscribe again. people have suggested every from calmoseptine ointment to monistat. nothing has helped and the stoma nurse said sometimes people choose to have their ostomies put on because of this reason. but not me- i had too many irritations and rashes with it. does anyone have any suggestions as to what could halp with the burning/fungus? im miserabale..
thankyou

LesaJT
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 2/1/2009 11:11 AM (GMT -6)   
Hello. You might have a yeast infection? Not sure. I had them a lot. The doc gave me diflucan off and on and I took that for up to 30 days at a time. also take as a preventative "Intestine Care DF" Made by Ethical Nutrients. It is a Acidophilus and Bifidobactcteria blend. It fights off the yeast. My RN said I might have to go on a yeast free diet. That is a whole other topic. The probyotic needs to be bought refrigerated and kept refrigerated to keep the live spores alive and fresh. I take 12 billion live cells or one capsule a couple of times a day. You can buy this at the health food store in the refrigerator. If you don't have that it can be bought at wal-mart unrefergeratored and keep it in the frige to keep it fresh longer. I had thrush in my mouth and yeast under my wafer too.Very uncomfortable and miserable. Hope this helps.
Lesa
 

Inberlin
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 2/3/2009 7:52 AM (GMT -6)   
HI ALL, I found this site this morning (Feb. 3, 2009) when I was looking for information about stoma reversal.
I am an American living in Berlin, Germany whose husband had colon cancer. He had a stoma since June 2008 and last week they reversed it. He will not eat! The hospital here gave him what looked like pea soup which made him sick. Then he refused to eat. Everything gives him cramps, and now he is throwing up. His chest burns like he has awful heartburn. He is trying to drink tea and water, and he isn't taking anymore pain medication as the Dr's think that is what has made him sick. I feel helpless. What can I bring him or try to get him to eat? The hospital here seems not to care whatsoever about him. I looked at what they offered him last night and it was again this awful soup, plus 2 pieces of white bread with butter. He didn't take one bite.  That means that he has eaten only that small amount of soup for thelast 6 days. His bowels moved twice since the stoma reverse lst Thursday. It is now Tuesday of the following week. I don't know what to do. The Doctor isn't available to answer any of my English questions. They don't have him on an IV either.
Sincerely, (inberlin)

LesaJT
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 2/3/2009 10:36 AM (GMT -6)   
If he is still in the hospital he needs an IV...Ask the hospital if they have a patient care advocate of some kind to listen to your concerns and help you do something. He needs pain meds. I am 2 weeks out and still occassinaly need pain meds. Do you have an embassy close by that might be able to help? I know that sounds drastic but he needs help. He may not eat much at first. Can they do a CT scan to see if everything is in tact in side? You have to find someone that will listen.
My doc made me gain a bunch of weight before I have mine reversed incase I did not eat for a while. He may need to find another hosptial. I had to with my first surgery. see if you can determine what he wil eat. Do they have a list of what he can have or can you bring him food? I craved things. My doc said I would be in the \hospital until I pooped, eat, and got off the IV meds. he needs nurishment and liqiuds, vitamins, etc. My husband had to find the CEO and head of nursing to complain. Things got better then.Hope this helps.
Lesa

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/3/2009 12:07 PM (GMT -6)   

Inberlin--welcome to the site!  I am sorry to hear your husband is having such a difficult time sad

He needs to be on an IV immediately!  He is probably severely dehydrated...do a pinch test on his skin...if it doesn't "snap back" into place he needs fluids.  Is he running a fever?  Vomitting can be a sign of a partial/full blockage so a CT scan would be a good thing.  They should be giving him pain meds, too. 

I would also suggest getting an advocate who speaks english who can help to make things happen for you.  Give a call to the embassy and see what they can do...they should, at least, be able to get you a translator for the doctor...

If you have more questions, start a new post with a topic on it.  That will get more posters to see it directly and get you the help you need faster.


Inberlin
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 2/3/2009 12:17 PM (GMT -6)   
Hi All, Thanks LEsajt,
My husband ate a little jogurt today and drank some tea and watered down apple juice. But nothing else. I am so concerned and getting no answers at the hospital here in Berlin, that I called his chemotherapist-oncologist who can speak some English. He is calling the hospital to talk to my husbands' doctor's and tell them to put him on IV again. Also he said he would then call me back. I am really worried, as my husband is also very depressed. Thanks for the tips. I am going to ask what he thinks he would like to try eating and bring it to him. It is now the 6th day since he had the reversal and is still in the hospital. I have looklede all over the net to try and find information what the diet and eating recommendations immediately after a reversal and don't find anything. It seems to me there should be more information than there is.
Keep some postitves thoughts going for him,
thanks, and many best wishes for everyone.
Inberlin
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