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Reversal of ileostomy

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Posted 2/16/2006 2:46 AM (GMT 0)
Hi Jean!

Thanks for checking in! My BM's are still pretty frequent. My mom went to my family doctor to ask how normal it is and he said that they did so much work to my intestines and manipulated them so much that it's going to take quite a while for my bowel to slow down and be completely regular.

Some nights I get up only 3 times to go to the washroom and others I get up like 10! So i'm not quite sure what makes things different each night.

I am able to get out a little more..I just make sure that i'm going somewhere where there is a washroom. I won't be able to work for quite a while though, not until my system is completely back to normal. I was in school before surgery so I didn't have a job anyway. I have to wait a year to finish my last semester so when I'm 100% better i'll be looking for a job before I go back to school.

Thanks again for checking in and don't hesitate to ask any other questions you may come up with.

Bye for now,

Ashley

Posted 2/16/2006 4:06 AM (GMT 0)

Hi Crohn's Spouse (Sorry I don't know your real name).

I am 20 years old. I've had an ileostomy since I was a week old due to Hirshsprung's disease and I just got reconnected the same day as your husband.

My case is a little different because i didn't have Crohn's but I also had a colectomy done when they reversed my ileostomy.

As for what is normal I'm not completely sure because i'm going through this all for the first time as well.

As for his exhaustion, I think that is normal because he did have a very big surgery done. I myself and very tired everyday because I don't get a lot of sleep at night due to such frequent BM's.

As for his moods changing, I don't blame him one bit. Since I had the surgery i've been through so much (pains, discomforts, new feelings and experiences) that I have many breakdowns and start crying or I get angry with just the world I guess because I have to go through everything before I get better. Just ask my fiance and he will tell you that my moods have changed as well but I know that it will all get better someday and I will be my happy go lucky self again. Just give him time :-)

His arms and shoulders being sore sounds odd to me since he didnt have anything done there during surgery. The only thing I can think of is he might be using his upper body to move around a lot more due to a sore abdomen. For a while after my surgery I had a sore back for the same reasons.

My question is, how many times is your husband going to the washroom a day? I'm still going so frequently that my anus becomes very sore. (mostly by dinner time when I have more food in my system). My frequent BM's start a bit before dinner and last all through the night until 8am or so and i'm losing a lot of sleep because of it.

Hopefully I answered all of your questions well enough. Please let me know if your husband is experiencing the same frequent BM's as I am.

Bye for now,

Ash 

Posted 2/16/2006 6:20 PM (GMT 0)
Hi Maureen
Just wanted to know how you are doing after your reversal? I'm waiting and trying to get as much information about a reversal as I can. Ashley has been very helpful just wanted to hear you experience. tks jean
Posted 2/17/2006 5:43 PM (GMT 0)
Hi Jean and Ashley,
I just had the ileo take down, I had a slight ileus and small setback. I am just starting to feel good. I too wore a "depends" just in case of an accident. I'm still working on eating normally. With the ileus, I had to start from scratch and NPO (nothing by mouth) again. I am having a little trouble telling the difference from gas and liquid, and am running to the restroom just in case a lot. My bum is sore also, I'm using Tucks, and diaper cream which both work. It's been 10 days, and like I said, I'm just starting to feel human again. Certainly not normal, but human.
Jean, how are you doing? Have you had your surgery yet?
Ashley, your story is amazing and I think that you're doing great. I hope that you are pleased.
Thanks for letting me BUTT in on you guys' conversation.
Cathy
Posted 2/17/2006 11:00 PM (GMT 0)
Hi Cathy
Glad to hear from you and that your operation is over and you are on the road to recovery. No I haven't had the surgery yet end of March or April. I'm starting to see what I can expect for the first bit thanks to Ashley and yourself. Sounds like you are pleased that you had the reversal as is Ashley. Any update you would like to share I would be pleased to hear from you again. Take care jean
Posted 2/21/2006 6:18 PM (GMT 0)
Jean- all is going well. My bowels are moving and are semi-firm. I had a day when I pushed too hard so I just drank more the rest of that day and ate Japanese food. Something gave me diarrhea and cleaned me out. Not much discomfort, I wouldn't call it pain. When I cough or sneeze, of course it still smarts a little, but generally speaking, I'm feeling good. I am eating pretty much whatever I want. They told me that this surgery would be surprisingly much easier than the first and that was a true statement. Abdominal surgery is never easy, but my 1st and 2nd surgeries were way harder to recover from. I'm thinking of starting back next week a few hours here and there at work. We'll see how it goes. Let me know how it goes. I'd be glad to answer any questions, if I can.
Take care.
Cathy
Posted 2/21/2006 10:49 PM (GMT 0)

Hi Ashley

Just want to check in to see how you are doing? BM's slowed down I hope! jean

Posted 2/21/2006 10:51 PM (GMT 0)
Hi Cathy
Thanks for the update. Sounds like you are doing great! Hope my experience will be as good. I'm not looking forward to the "many many BM's" that you all talk about. Take care jean
Posted 2/22/2006 5:05 PM (GMT 0)
Jean- I'm only going 2-3 times a day now. It does get better quickly. I'm not taking any meds to help with that either. I'm feeling good too. I can't be happier right now. My strength is improving and I have no pain to speak of. Life is good.
My best,
Cathy
Posted 2/27/2006 3:45 AM (GMT 0)
Cathy
So good to hear that you are doing so well - 2-3 times a day is nothing. How long were you in hospital to have the reversal done? Were you out of bed fast? Do you have a pouch or a reservor or just a straight connection? More questions for you. Can you eat anything? That's it for now. jean
Posted 2/27/2006 5:35 PM (GMT 0)
I was in the hospital M-TH, so 4 days. I was out of bed on Tues and walking the unit. I have a straight reconnect, no pouch or reservior. My anastamosis perforated, it wasn't supposed to be a two parter. I am eating anything, including salads/mexican food/japanese food/fruits/veggies. I have not eaten beans!!! Initially, I had difficulty differentiating gas from stool, but even that has improved.

My daughter is in the hospital with asthma so I have been with her constantly. Thank goodness McDonald house has a room for internet/shower/laundery/snacks/etc. Otherwise I would be cut off from my support group. I would not have made it through all this without this forum. Thanks to everyone.

Cathy
Posted 2/27/2006 7:26 PM (GMT 0)
Hi Cathy
I'm sorry to hear about your daughter, hope she will be out of hospital soon. You certainly have a lot on your plate right now and I appreciate your taking time to answer my questions. I feel so much better about all this just from your experience. I too will have a straight reconnect. Thanks again for all your information and I hope your daughter is on the mend. take care jean
Posted 2/28/2006 4:37 PM (GMT 0)

Hello All,

 I haven't checked in lately...been busy prolonging peoples lives (lol). Hope everyone is doing good! Ashley, it looks like you are starting to improve. Sorry to hear that it's going slow. Keep up the good faith and the great out look. I believe that your attitude plays a big role in recovery. If you get a chance, check out Dr. Andrew Weils' book titled 'Eating Well For Optimal Health'. Keep at it and I'll try to check back often.

Frank

Posted 2/28/2006 9:46 PM (GMT 0)
Hi Ashley
I'ts me again - haven't heard from you for a few days I hope you are doing well. jean
Posted 3/3/2006 6:20 PM (GMT 0)
We are out of the hospital and she's back to school today. That will give us the weekend to try to get her caught up with her homework. Nothing like a boat load of stress after coming out of the hospital for a kid. Luckily we got out in time because I have a date with my husband on Sat. night.

I hope everyone is doing well.

Frank- do you have the feeling that you "could" go all the time, not that you "have" to go, but "could"? I am eating whatever I want. But it seems like I feel like I could go all the time. I can wait and hold it and sometimes I can't go, but I feel the same.

Thanks,
Cathy
Posted 3/5/2006 8:21 AM (GMT 0)

Hey every one, newbie here. Just found this site today. My  background is caregiving to my 76 year old mom. She had 5 surgeries in the last year. April 2005 she wound up with an ileostomy that saved her life. I had no clue as to what this was, but I learned fast. She was able to have a reconnection Jan 23, 2006. Yes, lots of watery BM's. Still even 6 weeks later. We are keeping a food intake to poop outpouring log.....I call it the Foop Report. When she had the ileo, our home nurse clued us in that eating marshmello's and peanut butter (not at the same time) would slow down her output. Marshmello's took about a half and hour to work, thankfully there are 'Peeps' out there to keep her happy. The point I wanted to make was to JJean because she is not as young as the rest of the group. Yes, you will definately need to have on hand for when you get home from the hospital, adult diapers, tucks, prep H wipes and or cream and a large supply of soft tissues. Because of mom's advanced age all the BM's produced some very unhappy hemeroids. She has been getting a blood test every week to make sure her supplements/medicines are keeping up with the diarehia (sorry, don't see spell check here). The frequent BM's are washing out her essential minerals, potassium, magnesium, calcium. You do not want to overdue the potassium.....mom was in the ER 3 times last year for too high, too low, too high potassium. If it is too high it will kill you, extremely important to keep your eye on this.

My Kudo's to Ashley for surviving 20 years with her ileo. Those nine months was the hardest of my life. We were a prisoner in our home never knowing when it was going to leak. Mom says that even with going to the bathroom 15 times a day, life is still better than having a bag that leaks.

Sincerely, Rhonda G.

Posted 3/5/2006 1:34 PM (GMT 0)

Greetings Folks,  New to the site, not too new to the Ileostomy world.  I want to thank all of you who have posted.  I found this website while researching Ileo's and it has been of great help to me both mentally and physically.  I won't bore you with my life story, but let's just say my world took a nose dive about 6 months ago.  Battling Ulcerative Colitis for 15 years, (I am 44) I had a mild heart attack in September, then a perforated colon in October (thank goodness I was kept in the hospital) which resulted in the removal of my colon and appendix.  This gave me my first Ileostomy.  Overall, I didn't have too much trouble with it.  I was told after 6 months I could have the reversal.  Well January changed that schedule when my Gall Bladder acted up and instead of opening me twice ( couldn't do laproscopy because of all the scar tissue), they did the Gall bladder and reconnect on February 2nd. 

Since then I've had a new Ileo which initally caused me some problems because it is concave and trying to keep a bag on it was not too effective.  Nothing against hospital nurses, but they really don't have the expertise that a good Ileo nurse does.  Anyway, got that worked out and awaiting my 6 weeks to look at doing the take down.  I am encouraged by all the stories that I have read and am looking very much forward to getting this all over with and getting back to work and on with my life.  When they did the reconnect they took out the rectum.  My biggets problem right now is I am passing alot of mucous from the anal area.  Not bloody, just frequently, about every 30 minutes.  Five - Six times per night.  Also, my bag is filling quickly and has to dump about every 30 minutes.  At least 3 times a night.  I am glad to read about the peanut butter and marshmallows and will give them a try.  I also have fought the potassium battle, and my Colo Doc told me my best new friend without a colon is Gatorade.  I drink one a day and that seems to keep me grounded.  Especially if I get light headed or irritable.  Thanks again for letting me vent, and I'll be checking in often.

Posted 3/9/2006 12:08 PM (GMT 0)
Hi all! I am 25 years old, and I have dealt with CD for the last 6 years. I had a temp loop ileo done in 2003 to help with rv fistulas. Well, on the 27th of Feb., I had the takedown surgery for my ostomy. I am MISERABLE!!! I wish now that I hadn't done it. I am spending at least 3-4 hours a day in the restroom now. I have horrible cramping, even with the immodium. I called my surgeon and told his RN that I wanted to be put on the next surgery schedule to have the stoma created again. This is so horrible! My rump is sore, my stomach hurts constantly, and I feel terrible. I know that it has been less than 2 weeks post-op, but if this is what I signed up for, I don't want it!!!! I have mostly been eating saltines, and other bland foods. I know what I should be eating, but I am so afraid of more pain that I don't want to eat. I wake up everyday between 5-6 to start at least 3 hours in the bathroom. I think I screwed up royally. Any help? Thanks! Beth
Posted 3/9/2006 2:18 PM (GMT 0)
Beth,  Sorry to hear things are going rough for you.  I can't imagine the pain that you are going through, and I am certainly no expert on it.  I am hoping to have my take down the first week of April.  I don't know if it helps, but since my reconnect and second Ileo, I was dumping my bag 2-3 times per hour.  Of course, I was getting dehydrated and finally called my Colo Doc and he put me on the Immodium as well as either Citrucel or Metamucil once a day to slow things down.  I don't know if your Doc has recommended either one of those.  So far it seems to have helped although I have only been on it two days.  It certainly has helped in forming stool instead of just liquid all the time with a constant flow.  He also put me on the BRAT diet, (Banana's, Rice, Applesauce and Toast) which I eat every day, but he said to also eat alot of high carb/starchy food like Pasta, Potatoes etc. to help form the stool.

I see that you are only eating saltines and that is because you are afraid of the pain.  I too backed off alot of things after my second Ileo, and I have come to find out that the more I did it and didn't try to maintain some normal eating habits, the worse my flow got.  As for the cramping, I also experienced alot of stomach cramping, but found out this was mostly due to eating too bland a diet and not enough food to begin with.  Like I said, I am no expert on this and will endure some battles in the near future when I get mine done.  I guess I am saying like you said it has only been two weeks, and not to give up just yet.  The body is a strange and interesting thing.  Everyones system is a bit different, and takes different times to heal.  Hang in there awhile and see how it progresses.  Remember your body has been through a shock and needs time to right itself also.  I'll be praying for you and hope things take a positive turn around for you.  Keep us posted. 

Phil

Posted 3/10/2006 4:29 AM (GMT 0)
Hi Rhonda

Thanks for more information on the reversal. Each person who has had the reversal says the same thing, they are glad they had it done.  Hope your mother is doing great, and you too. tks   jean

Posted 3/11/2006 9:58 PM (GMT 0)
Hi Cathy
Just wanted to check in to see how you are doing. Hope all is good and that your daughter is well. Take care jean
Posted 3/12/2006 12:39 AM (GMT 0)
smurf  Not nearly so blue now!!! Hi all. I just wanted to let you know that my guts have calmed down a ton! I started taking the 8 immodium per day that my doc recommended and I  am doing great! I am off the pain meds, and today (less than 2 weeks post-op), I even went to the library by myself. My actual incision is still a bit sore, but other than that, I am feeling pretty good. I've been keeping a food/meds journal, so I can figure out what is good and bad for me. I have a pic of my scar on here if anyone wants to see it. Thanks all! Beth

http://lukewarmtamale.blogspot.com/

Posted 3/12/2006 1:58 PM (GMT 0)
Beth,  Glad to hear things are turning around a bit for you.  I am sure it has been quite a booger, but it is good to see that perhaps the light at the end of the tunnel is actually daylight and not an oncoming train.  Hang in there and keep us posted on how things progress.  I do have a question for anyone else though that might be reading this.  I had my reconnect on Feb. 2 and am awaiting the final takedown.  The last week I have really experienced alot of pain and stiffness in my legs and joints.  This morning I wake up with swelling to the ball of my foot making it painful to walk.  Anyone else experience this?  Potassium deficiency?  Hopefully I'll get into the doctor tomorrow to find out.  Just curious. 

Phil

Posted 3/13/2006 10:17 PM (GMT 0)

Hi everyone, just wanted to update you. The Food Log I did with my mom revealed that the days she had oatmeal for breakfast were the best days. I spoke with her Doc and they said with all her meds she would do well with the immodium. This has helped quite a bit, as well as taking a fibre supplement. I would recommend the Benifibre brand as it really does totally disolve in anything and has no flavor of its own. Her doc also recommended a power bar with at least 5grams fiber and 10grams protein. She said a high protein diet would help. And all of this is helping. The good days to bad days ratio is equalizing, finally! Whew.

As mom says "Old age ain't for sissies!" - Rhonda

Posted 3/14/2006 7:21 PM (GMT 0)
Hello everyone,
I am at work right now and decided to look up anything about ostomy reversals and it brought me to this sight. I have read everyones experiences and I just started crying. This has been a very emotional experience (as Im sure most of you know what I mean). I have had an illeostomy for 5 years now after battleling Crohn's Disease. I wont bore you with all the details, because after reading your postings I realize that you guys have been through the Crohns ringer too.
I want to reverse my ileostomy so bad. I know most of it is vanity. I have always had a terrible time dealing with it, but eventually I did come to terms with the leaks, unromantic rustles of the bag and cost of ostomy products. But something brought me to this sight, and Im shaking as I write these words... I want it gone so much.
I have been well for five years now. No problems. My husband feels I am gambling with my remission if I reconnect. And I know its a possibility. I understand that many of you have had the reversal done. I need to know the down time, I work and cant afford to loose too much time. I have made a appointment with my doc. whom I havent seen in five years. I know he will try to talk me against it. But if it has worked for many people, it may work for me.
Help Please
Crissie
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