What can I expect after my ileostomy reversal?

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bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 9/21/2008 10:53 PM (GMT -6)   
I'm awaiting my ileostomy reversal which will probably be in about 6 weeks.  What can I expect after the reversal?  I have Crohn's disease and I had about 10 inches of disease in my terminal ilieum.  The colorectal surgeon removed a foot of my small intestine.  The only other place I have the disease is in my rectum which in inactive.  So right now I guess you could say the crohn's is in remission.  What kind of recovery is involved after the reconnection.  I had my surgery done laproscopically and have a loop ileostomy.  Can anyone give me some advice and tell me about their experience after reversal?  Thank you.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3064
   Posted 9/22/2008 8:01 AM (GMT -6)   

Bella--wow, the six weeks will go by fast for you, even though the waiting is the hardest part!  Many years ago, I did have a reversal, but for many reasons I now have a permanent ileo.  The surgery was easy, but my first surgery was open not lapro and I know everything is SO MUCH EASIER lapro!

If you sort the threads by topic and go to about page 63, you will find many threads for what to expect after your reversal...Good Luck!!


mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 9/23/2008 3:57 AM (GMT -6)   
bella I had my reversal a few months ago and every thing went good. I felt better after thus surgery then any of the others I have had this year. The bad thing is that at first you have to go to the bathroom all of the time. But after a while the DR. will tell you to start useing a anti dierreia med. But you have to wait tell he tells you to. At first it made me fell sick when I went to the bathroom.Two of my sisters are nurses and thay told me that it was called let down sindrome.I hope this has helped you some and good luck.

noliecanoli
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 9/27/2008 6:53 PM (GMT -6)   
Hello to everyone..
 
I am new here and I have several questions.  December 31st  I had a subtotal ileostomy due to c-diff infection, complicated by ARDS/life support 30 days.  Due to this, my incision is approximately 13-14" long and had to close naturally without stitches.
 
I am now healed and will be going in October 8th, 08 for my reversal, as my rectum is still intact.  I am 5'2 and am trying to maintain my weight around 121lbs.  I keep reading about weight loss, excessive bm's, etc.  Should I try and gain more weight now?  and also now I can eat anything, what is the best food to eat following surgery?   My surgeon says this type of surgery is much more painful than laprascopically done.  How long were any of you on pain meds, etc...
 
I would like to know if anyone else in here has had the two above diseases together. and am interested in anyone who has had their reversal WITHOUT LAPRASCOPY.  No j pouch is needed.  Sorry for so many questions, my husband and I need help!!!
 
noliecanolie

mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 9/28/2008 2:17 AM (GMT -6)   
This post is for noliecanoli. We have alot in commen. I did not have c-diff infection.I had a self inflicted wound to my abdomen.I hade 1/2 half of my small bowel removed.At first I had a 8 inch scar from my belly button to my pelvic bone along with a few more on my right side.Then I got a infection from my bowel leaking into my abdomanal cavaty so thay had to open me back up. That scar go`s from my belly button up almost to my rib cage.I was in a drug indused coma for a few weeks. When I was in the coma I got A.R.D.S. I don`t remember most of this but I know that for awhile thay did not close my incision because thay had to go back in about every two days to clean it out agean. After 3 months thay sent me to the sixth floor for rehab to learn how to walk.I was there for 5 weeks then went home. 2 weeks after my left lung colapsed and I had to go back for 5 days. I had my reversal in june.I am steal on pain meds. but that is because I now have a infection in my back called discites.The surgery for my reversal was not to bad. But you cannot eat for 4 days or so after the surgery. When you first get you reversal you still have to eat the same as you did befor tell you heal. Then you can eat every thing its just that some things come out real fast. Don`t try to gain weight,evan with the excessive bms. my weight has stayed just about the same as when I got out of the hospital. What I would like to know from you is what your DR. says about how your lungs will be in the future. When I get a little mucus in my lungs it hurts real bad to cough it up and I can hardly cough in the first place.Twice my husband and I have gone to tje casino to play. Both times we stayed about 2 1/2 hours and thay were at off times when there was not very many people there so there was not to much smoke. But both times after we left I had a hard time breathing. It hurt and my chest felt tight.Have you had anything like this happen to you. Please write me back here or E-Mail me at dlh19 @live .com
Lost half of my small intestine, Nerve damage to right leg,part of my right hip bone removed,hernia,infection in my back called discites,and depression


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3064
   Posted 9/28/2008 5:19 AM (GMT -6)   

noliecanolie--welcome!!  This site is so helpful to some many people...I am glad you found it:)

While my diagnosis is not the same as yours, I did have a reversal many years ago.  While there is some pain involved, I don't think it will be as difficult as your prior one.  Everyone is different (and our doctors, too), so to say exactly what will happen is hard, but once your bowels wake up, you'll be started on clear liquid then soft foods.  Have you taken a look at some of the earlier theads on reversals?

Also, you may get more responses to your questions if you create a new post regarding the c.diff and ARDS.  I'll be thinking of you on the 8th, let us know how things go for you.


noliecanoli
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 9/29/2008 1:14 PM (GMT -6)   
thank you both so much, mom9mom and Ohio, and so quickly!
 
mom9mom,
 
your story moved me and I hope things calm down for you...we do share similar things..I got the ards before my colon was removed and after I was put on life support, so like you, my incision was open (approx 4") and I too went in every other day to have what you did the cleaning out which is with a "wound vac" or vacuume for leakage. 
 
as far as your questions regarding the ards, and lung problem...I never go to casinos anymore unless my husbands band is playing, and I have only done it once since ards..
I am so glad you shared your symptoms, because I thought I was alone in that feeling of lung pressure, pain, etc...I only stayed one hour and had to leave.  Apparently from all the coughing I did upon awakening I broke some ribs, and have had extended pain.  After the viral meningitis in august, again pain and a hard time breathing.  There is a great site called
ards.org and this has helped me alot in understanding this problem.  Also, I maintain appointments with my pulmonary specialist and ask these questions of him..  his response has been, that for us, it is easier to get "infiltrates" in the lungs than most.  But my pulmonary function study test was normal in July...I had 60cc's of fluid come out of the tubes they had in my sides, as well as pneumonia...my lung never colapsed after like yours..and i have yet to cough up anything since thehospital.
 
Best advice, is walk, walk, walk, and take in fresh air as often as possible...and you survived for a reason/opportunity.
 
thanks for the advice OHIO76 AND MOM on the food/diet, and weight and for your prayers on the 8th.  Mine will not be laproscopic, it will be a full 14inch cut, again; did this happen to anyone else?
 
 

mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 9/30/2008 1:18 AM (GMT -6)   
noliecanoli Thanks for the web site for the ards.I am not to good with computers so I have a hard time finding sites that help me with my questions. I will check it out tomarrow.I forgot to tell you about the diet it was the hardest part of that surgery not being abel to eat for 5 days I was starving. Big change from the first time I woke uf in feb. then I just could not stand to eat anything about 4 bites and I was full.Any way thanks for the advice about the fresh air. I cant walk very much it makes my back hurt and my hip. My hip bone was shatered at the top and I have nerve damage on the right side so I us a cane and don`t know if it will ever fully recover.One more question do`s your rib bones still hurt ?
Lost half of my small intestine, Nerve damage to right leg,part of my right hip bone removed,hernia,infection in my back called discites,and depression


noliecanoli
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 9/30/2008 11:07 AM (GMT -6)   
Hi mom9mom,

so sorry about your hip, back and body in general....very sorry, in regards to your question, my ribs areas hurt when I breathe in deeply, or have laughed too hard...it's better, but what I was explained was we had a mechanical device keeping our lungs inflated/deflated, and additionally chest tubes, so this and the ARDS which is an injury to the lungs is enough to have this tight sometimes painful feeling in there...

since walking is hard for you, may i suggest something else...SING!!! while in the rehab unit, my respiratory therapist said if I sing, that is the best way to expand my lungs for now and keep the muscle toned...now, i can't carry a tune especially since the ventilator, however, i have improved, and
well, i love to sing, i always have...maybe try putting on your favorite songs ones that push your voice and sing sing sing....i started with 15 minutes a day and am up to 3-4 times a day for at least that long.
my vocal cords are still slow to recover, but as I said I passed my pulmonary function studies tests and i believe that helped me.

i hope this helps,
noliecanolie

mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 10/1/2008 1:28 AM (GMT -6)   
cool  Noliecanoli Thanks for ansering my question.There is two more things I would like to talk to you about how long did you have to be on oxigan ? what is the test that you had done on your lungs? It must seem strang to you that I am just now asking about this when I had it more then 7 months ago.The reason is that I was in a drug indused coma for about 3 weeks and I had so many medical problems that no one ever even thought to tell me about the ards untal last week and that was just by chance.Two of my older sisters are nurce`s and last week we went to salylake city hospital for my sister S. She has a kidney disease and had a transplant in oct. I told my sister M. that I was worryed about getting sick this winter because my lungs hurt still and she said thats from the ards. and that I should get a flu shot and a namonia shot this year. Since then I have been trying to find out about it so thank you so much for sharing your information. I can`t tell you how much it has helped me.I ask my sisters and thay tell me what thay know but it`s not the same as talking to someone who has had it so once again thank you.
Lost half of my small intestine, Nerve damage to right leg,part of my right hip bone removed,hernia,infection in my back called discites,and depression


noliecanoli
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 10/1/2008 7:12 PM (GMT -6)   
dear mom9mom,

My sister and my best friend both work at the hospital I was in and I worked there several years ago. She demanded to know everything going on and happening and made a log of it all while I was out. My drug induced coma lasted 30 day...after I awoke i remember them telling me slowly what all had happened during my time "out"...and even if they mentioned ARDS..it takes a while for our brains to register anything while we are learning to get back into our body, and assimilating, and learning to talk, walk, swallow and eat..etc...I remember asking them several times in the following months, now what did i have done????

The test I had is called a Pulmonary Function Study Test, or a PFT and only a specialized person can perform this, ie. usually a respiratory specialist in a Pulmonary Specialists office. While you were in the ICU, you had doctors assigned to you who were pulmonary specialists in order to even have the trach, ventilator, etc...and you can call that hospital and you are allowed to ask for the medical records department for copies of all your reports during the time you were in....all of the doctors are on these reports..you can follow up with phone calls to their office..and I am shocked they did not follow up on you..I saw mine at least every 2-3 weeks until the PFT which is done approx. 6 months after release from hospital. So its time for you to take control and get your records,..and they are not suppose to charge you for these copies. It took me a couple days to finally read them.

If any more questions come up please keep asking...This is the only test in which they can measure if you had any permanant damage to your lungs or loss of usage. Good Luck..

noliecanoli

mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 10/3/2008 4:41 AM (GMT -6)   
Noliecanoli I went to the ARDS.org site today thay had alot of info that I was looking for so thank you again for tailing me about it.One of the things I worried about myself was expland on there and that was I have a hard time remembering things or when I am talking I cant remember the word that I want to use. It takes me three or four trys to get it right some times also I have always read alot but now I find it hard to consantrate part of the time.You did not say how long you were on oxigan ? I will talk to my surgeon on the 8 about who was the pulmonary specialist working on my case.I have to go in on that day to have a MRI on my back( I have a infection in my back called discites)Hopefully thay will tell me that its better and that I dont have to do anymore intravenous antibiotic any more. I have been on cubicin for 11 weeks. I also have a appointment with my surgeon that day.I have alot of hernated areas in my abdomin. he dosn`t want to do any repairs for 6 more months but I have one area that do`s not look good to me.In your first post you asked about pain meds. and I never got back to you on that. Well if I had only been on the meds for that surgery I dont think I would have been on them very long.Dont feel bad about taking meds. if you have to just make sure that you only take them if you have to.I know alot of my kids hate to take even ibuprofen but its not smart to late yourself hurt that much if the meds. can help you.For me if I forget to cange my fentanyl patch I am no good to anyone or even myself because I hurt to much to do anything but think about my pain.
Lost half of my small intestine, Nerve damage to right leg,part of my right hip bone removed,hernia,infection in my back called discites,and depression


noliecanoli
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 10/3/2008 4:47 PM (GMT -6)   
mom9mom,
i am so glad you got help on that site...as far as the oxygen, six weeks, and sometimes i feel i should have a treatment a couple times a month. and thank you for your advice on the pain meds.

in the beginning i had to ask everyone the same questions even two days later that they all ready answered!
and even months later the short term isn't right, but i am also in menopause! It does get better though, they say after a year, and I can already see that difference 8 months post. But I also find I need a lot of quiet time to recharge and empty out and meditate...then i can take in more in the long run and this has been helping my memory as well as staying hydrated...drink drink drink and i take excellent probiotics and vitamins...you will feel better once you see and hear from your pulmonary specialist. I will keep praying for you, noliecanoli

mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 10/4/2008 12:43 AM (GMT -6)   
tongue  Noliecanoli Thanks for your prayers. When I wokeup this morning my right side of my abdoman was swollen as well as my feet. my feet has done this befor but not my abdoman so its a good thing I made a apointment with my DR. Anyway I am going to make a new post on ARDS on this site to see if any one alse might have had this problem.That way it has its own post with the right heading so look for it.I was on o2 for 4 months in the hospital and then at home about 4 more weeks but only at night.
Lost half of my small intestine, Nerve damage to right leg,part of my right hip bone removed,hernia,infection in my back called discites,and depression


old ileo UC2
New Member


Date Joined Oct 2008
Total Posts : 1
   Posted 10/4/2008 2:16 PM (GMT -6)   
Hi all,

I know lots of you have had ileostomy reversals for different procedures, but I had a rare form of UC and had the sub-total colectomy and then they left the rectum in place with making an internal pouch out of small bowel tissue and left it inside to heal for the time before they did the pull down and re-attachment.

During the time of the ileostomy I used a few ostomy tricks like using the filter type bags and putting them on at an angle so that the air would escape filtered, while the bag would capture the residue. That way I could not worry in certain situations that could be "ify" without wondering if the bag would over inflate itself with air. Also those little filter bags were great for intimate encounters because they weren't heavy and wouldn't usually fill during the "session" with my husband. But like anyone I had those times where the bag did break or leak. It's a fact of life, and it's embarrassing.

One thing to think about is to get yourself a business size card with a symbol of a bowel or ostomy on it and carry it with you with your name and your condition and maybe your doctors name, and ask to use the handicapped bathroom so that you can do what you need to do what you need with your ostomy at bathroom break times. It makes it so much easier. The card usually makes it look official and doesn't raise too many questions as to why you need the handicapped bathroom.

After the pull down or reconnect, however your doctor terms it ~ where they reconnect the pouch to the rectum ~ it will be a time of learning what you can eat and introduce one thing at a time to see how you do. If you've had high outputs during your ileostomy time, make sure the doctors know that and they may make the pouch a little bigger for you. You will expect a lot of output around the anus for the first while but your skin will get used to it over time. There is a product on the market called viscous xylocaine. Use this dabbed on some cotton to apply to your skin around the anus will numb it. It really is a godsend when you are first trying to get yourself thru the adjustment time., and also great to have around in case you get a diahreal outbreak with one of the foods you try post op. My scars still pull and hurt when I move the wrong way, and I'd love to get that horrible scar of mine re-done (I had complications of another sort during my re-attach surgery).

If I can help any one else out there with more info... It's been years since my rehookup, I was one of the first few guinea pigs in Canada for the J pouch ~ my sub-total was in 1992 and the rehook in 1993 so I'm an ole timer =) hawkfyre at gmail dot com

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3064
   Posted 10/5/2008 8:49 AM (GMT -6)   
old ileo UC2--welcome to the forum! I just thought I say "hi" and suggest that your start a new thread with your topic. Sometimes they don't get viewed when attached to another one. Glad to hear you are doing so well...when we are guinea pigs, we can only hope the outcome is a good one!!

Post Edited (OHIO76) : 10/6/2008 4:05:01 AM (GMT-6)


sandrajj
New Member


Date Joined Sep 2009
Total Posts : 1
   Posted 9/10/2009 1:19 PM (GMT -6)   
i went to have appendix out they caught my bowel on the way out then left me for six days said the pain and swelling was just wind it wasnt all my food and poo was killing me i got perenitous had to have more surgary to save my life was in icu on life support for a while then on a ward for 9 weeks wen i woke i had a ileostomy i was screaming so upset as all i new was i went to have my appendix out i had to learn to walk and eat as my legs were weak after being layed down for so long i have been out of hospital now 5 weeks now getting it reversed in november if i am fit enough i cannot change this bag my boyfriend dose it for me he got learned off the stoma nurse as its a emergancey ilieostomay so its right on my waste line so wen i sit up i have a cerase on my tummy and it leakes out the sides all the time i am slowley getting stronges still goy pains in my lungs n seem to lose my breath quickly dose anyone no wat this could be its not my legs that stop me its my lungs im not going out till my reversal n dont like to see anyone as cant do will all questions and people feeling sorry for me and i feel like a freak n that everyone is stairing at me n everyone nos i no its just me paroniod but thats how i feel
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