When can you eat normally after a Reversal Ileostomy?

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yellowdaisy
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Date Joined Sep 2009
Total Posts : 9
   Posted 4/26/2010 2:47 PM (GMT -6)   
hi there. just read your post and want to say that you seem to be doing well. I had a bad time with mine after having it reversed 2 half years ago. I thought I would never be able to lead a normal life as I had to continually need the loo at very short notice and sometimes not making it. I tried eating only certain foods but no matter wot I ate it made no difference. I can have a curry, roast dinner, or just light meals and the result is the same. So therefore I have whatever I fancy and peanut butter is one of them. (reminding myself I have just run out of it!!) I know when I can feel free to go out as I know the warning signs. I have to always carry certain personal things with me - just in case. I go to work so life's not that bad. I hope you get on fine as I'm sure you will. Gill.

ElizabethInDallas
New Member


Date Joined Jul 2010
Total Posts : 1
   Posted 7/14/2010 5:55 PM (GMT -6)   
I had a "temporary" (aka "loop") ileostomy by a surgeon who has since lost his practice due to malpractice and wrongful death claims. He did such a poor job, it herniated immediately (which he refused to acknowlege back then, and I naively follwed his lead) and after 4 YEARS it developed gangrene. YUP... almost died. I lost a foot of colon, my caecum, appendix, and a foot of small intestine. All this to divert stool just to get a little fistula to close. The illy almost cost me my life.

I researched for over a year before I selected the surgeon who would do my takedown. He did a bang-up job, but suspected Crohn's or colitis of some sort (and we have tested exhaustively) when 4 years later, I still have chronic diarrhea. No explanation. Due to malabsorption, I have pernicious anemia and must give myself B12 shots weekly to survive. Without them I would eventually die.

I have noticed that caffeine, even a small bit, will act like Liquid Drano. I have opted for lemonade (natural mild diuretic) and sea salt (which replaces essential minerals lost from the run's), and a daily Prilosec. I also take a pro biotic or eat a probiotic yoghurt. The healthy bacteria in most of our colons is LONG GONE, after not having any food for so long. They literally starved to death!

Most days (unless I have a soda) I have soft, loose stools, but not the explosive, painful, hemorrhoid-causing diarrhea like before. They're totally manageable.

I have tried eliminating so many different foods.. but this is the magic key for me. Hope this helps some of you.

My condolences for anyone that's ever had an illy. Your intestines seldom work right again after. I would most likely die before I had one again.

God bless.

yellowdaisy
New Member


Date Joined Sep 2009
Total Posts : 9
   Posted 7/15/2010 5:34 AM (GMT -6)   
IN REPLY. IT DOESN'T MATTER WHAT I EAT AS MY BOWEL HAS A MIND OF IT'S OWN. THE ONLY THING I DO AVOID REALLY IS TINNED TOMATOES, WHICH I LOVE... THESE DAYS I KNOW WHEN I'M GOING TO HAVE A BAD DAY, AND EVEN NOW, 2 HALF YEARS LATER, I WAKE UP IN THE NITE AND RUSH TO THE LOO. I CAN DEAL WITH ALL THIS AS I HAVE TO - AS ALL OF US ILLYS DO. SOMETIMES I FEEL SO UNCOMFORTABLE AS THOUGH I'M SITTING ON HOT COALS. IT'S HORRIBLE AND I WOULD LIKE TO KNOW IF ANYONE ELSE HAS THIS SORT OF PAIN. PLEASE LET ME KNOW. THANX ALL.

UM....
New Member


Date Joined Jul 2010
Total Posts : 1
   Posted 7/17/2010 7:26 PM (GMT -6)   
Hi all
I am sorry for each person's suffering. You are all really strong.
I had a rectosigmoid resection (rectal cancer), lymph node removal, complete hysterectomy & appendectomy on June 8. no chemo or rad (yet). Iliostomy and scheduled for reversal early Aug. not much rectum left ( a few inches) but i think most of my sigmoid is still there.
And here I am complaining about my itchy stomal skin... I had lost a bit of weight the month before surgery and more post.. i've gained back 6# and had been feeling that I am at a good weight.. i guess after reading all of your experiences, I better bulk up while I can! Even tho I still have some time before reversal, all of your experiences and advice are so valuable, thank you!
I am walking, doing yoga, kegels, taking lots of supplements... feeling pretty good, a little light-headed when I stand up, some spasming in the rectal area...
I'll keep ya posted!

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 7/17/2010 10:47 PM (GMT -6)   
Angel Baby,  My you have been though a lot.  Although I do not have a appliance I have had a total colectomy.  Mine was Feb 19,10 and I still mainly stick to turkey and chicken, things that are easy to pass and not all the fat content.  I am allergic to dairy so I stay away from all of that, but if you have dairy in your diet, it may give you additional gas that you may not want.
 
So many of us have lived our llives by our bowels and intestines.  I had the opposite problem from you I had C and I hated what I had to go through to try to feel good.  Glad that I had my surgery but I am 5'9 and I am down to `125 lbs...way too thin for me.  But I eat everything fatning that I can.  I hope that things get better for you, I just really wanted to send you some positive wishes your way.  Sorry that I can't help with your problems as I don't have any of that, they reconnected me when they did my surgery, so for that I am thankful.  But it too comes with its difficulties also.. so stay strong, and be well.
 
Leslie

Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


Jan Girard
New Member


Date Joined Aug 2010
Total Posts : 1
   Posted 8/12/2010 1:32 PM (GMT -6)   
Did anyone hear of taking Welchol to slow down the intestines?

ARTHURJT
New Member


Date Joined Aug 2011
Total Posts : 2
   Posted 8/18/2011 10:22 AM (GMT -6)   
I underwent a reversal of a transverse loop colostomy approximately three months ago. I'd been with the colostomy for just over a year. The first few weeks post surgery were the most difficult in that I was frequently unable to control movements, and the incontinence soiled to a lot of clothing and bedding. Chucks and pads were essential. Slowly I began to regain control of my bowels, but even now, three months out, it is not easy. Whereas I had experienced trouble almost daily, now it has diminished to maybe once or twice a week. I find that I am almost always extremely gassy, and that flatulence and controlling flatulence is often a problem, and can be embarrassing. While I have diarrhea about once a week, my movements are almost always loose. I've discovered that certain foods can be eaten only at the risk of becoming ill, sometimes violently ill. Anything fried is strictly taboo. Chinese food is out. India food can be a nightmare. Anything that is very fatty is trouble. Grease can trigger problems. Fruits and vegetables, ironically, are well tolerated, as is almost all forms of protein---meat, fish, fowl, eggs. Dairy is hit and miss. Metamucil each morning and evening helps to add bulk and some binding. Immodium is essential to keep in the med cabinet. A probiotic, like ALLIGN, can also be beneficial. It isn't easy, but consider this: my daughter suffers from Crohn's Disease, and her flare ups come much more often, and much more violently. And she has lived with the disease almost 10 years now, and it will probably be there forever. My gastro doc assures me that over time I will improve, and that it often takes year or more to get almost back to normal gastro functioning, if ever. Whilee I likely will not regain the cast iron constitution I had prior to my illness, I should be better than I am now. At any rate it sure beats the hell out of maintaining a colostomy.

Good luck to all.

Bay Area Guy
Regular Member


Date Joined Jul 2010
Total Posts : 166
   Posted 8/18/2011 9:29 PM (GMT -6)   
To slow yourself down, try bananas, rice, toast and yogurt. Those helped me greatly when I had my ileo taken down about a year ago. I ate a banana and yogurt first thing in the morning and just before I went to bed. It tended to slow things down quite nicely.

Some of the stuff you said you still can't eat probably isn't all that great for you just yet anyway. Some of the stuff has quite a bit of sugar in it (cereals, soda, dairy, salad dressings) and sugar will make you loose. Fried foods probably aren't all that great either.

For the weight issue, add some Ensure to your diet. I needed to gain weight while I had my ileo (I went from 170 pre-ileo to 130 at the depths of my problems), so I needed to get back up to 170-180 before my surgeon would reconnect me. While I drank lots of water, I also had an Ensure with each meal, both for the calories and for the protein and iron (as I was also anemic at the time). I'm not sure where you live, but if there's a Costco nearby, they seem to have the best price for Ensure that I could find. I just hope you like vanilla, as that's the only flavor I could find here in the San Francisco Bay Area.

I'm sorry you're suffering right now, but things will get better. I promise you that.

sudeha
New Member


Date Joined May 2011
Total Posts : 7
   Posted 9/12/2011 5:34 AM (GMT -6)   
Hello....well i was hoping i could be off any of these sites but i need some much needed support. i have just finished reading all 3 years of posts to see that i am NOT alone. I had a rectal tumor back in Sept. 2010, had chemo and radiation for 5 weeks, and 2 big surgeries. i had my rectum taken out and about 2 feet of my large intestine and was given a temporary illiostomy. Had a ton of complications for 2 1/2 months with the illiostomy so my doc reversed it Feb 2011. So its now been 7 months. I think i beat you all. and this is NO exaggeration. No matter what i eat, no matter, what i take to bulk my stools, no matter what meds natural or pharmaceutical i take i am going 80-100 times a day!!!!! I LIVE ON THE TOILET MORNING NOON AND ALL NIGHT LONG! I am exhausted and have not slept more than a solid 2 hours in over actually 1 1/2 years. I have taken lomotil, Immodium, Opium tincture, do psyllium 2 times a day, take bentonite clay, I only have one protein smoothie after i get out of bed which is usually around 1:00pm-3:00pm because i am up all night going and going. and then one more small meal like rice with avocado or 17 hour slow cooked rice and lentils or rice pasta. even if my stools are more formed i am going and going the 80-100 times a day everyday no change. I have accidents all the time and live in diapers. My body has become immune to the Lomotil and opium tincture. i have taken them so long and so much they don't work anymore. I am seeing a holistic doc now too who is trying to help. I had been given this anti spasm pill because every night when i lied down to sleep i began having these constant awful anal spasms that would not let up or allow any sleep whatsoever. so he gave me this pill called Hyoscyamine. It dissolves under the tongue. it also helped to dry me up a bit more which allowed me to sleep maybe 2 hours the most straight uninterrupted without waking up. i want off all my meds so i asked my holistic doc the original plant form of this drug. He knew what is was right away and had it in his office. It is a liquid herbal tincture called Hyoscyamus Niger. I have been taking it for 2 weeks now with much better results as far as having some hours of being dried up mostly during the day and sometimes if i am lucky a few on and off hours in the night. i only need to take 5 drops in an inch of water and that is all. however if i take one or two drops more i can flip into awful hardened stools and as they try to pass i go into a 10 in pain. its awful. however without any meds i would have constant 24/7 liquid diarrhea all day and all night non sop. and i mean NON STOP!!! I can easily go 20-30 times in one hour!! and i mean running my a-- off to try to make it each time to the toilet. i am getting good at this but still have many accidents in a day. i basically have hardly any life outside my house as i take a HUGE change if i go anywhere. My God is this ever ever going to change? My docs here are at a loss with me and are sending me to OSHU in Portland Oregon coming up. I have a feeling these speciality docs will offer me a permanent colostomy but really i must wait this out and keep trying everything i know to do. i do NOT want a permanent colostomy at all!!!! and I will offer any of you who have the awful unbearable bile burning a prescription powder called, Cholestramine. it is a powdered resin that binds bile. i MUST 100% take 2 packets a day. it does take 12 or so hours to get into the system and start working. the very few times i had forgotten to take my 2nd packet in the evening, i suffer and cry and cry because the burning is absolutely unbearable and NOTING, no ointment, no pill no nothing can stop this burning. so if you are going to take this seriously be on top of the exact times you take it and do NOT delay the 2nd packet by more than 1/2 hour.. Make sure to rinse your mouth out several times after as this resin can be harsh on your teeth. And for anyone advising which i will so value and appreciate, yes i have done the brat diet, no i hardly eat any fruits or veggies, i am a vegetarian for 40 plus years, no meat, chicken or fish. Good news is i am cancer free but man oh man what i go through 24/7 is totally wearing me out and i just have hardly any life outside of my toilet. I know they say it takes a minimum of a year for the bowels to relearn how to absorb the water. But i barely eat so how is it possible i poop so much in a given day. i just don't get it at all. HELP!!!! Thank you!!! Hope there are still some readers here after so many years of posting here! confused

mandy70
New Member


Date Joined Oct 2011
Total Posts : 2
   Posted 10/30/2011 10:40 PM (GMT -6)   
Hello All,
This site has been a great help and I feel that im not alone. I have been looking after my Dad for 2 weeks post reversal. We left the hospital with no word on what he can eat or any other help so it has been trial and error for the first 3 days, then i found your site.Like all the storys i have read he has diarrhea and goes to the toilet about 30-50 times a day,with a burning butt. We using the zinc cream and baby wipes they seem to help with the sore butt.Im cooking alot of pasta,rice,pototes with vegies.We tryed some yogurt and that was not good he was up all night and in the morning,so i want try that again. Any way thanks for all your advise it sure has helped. good luck to all xxx

Mandy70

sudeha
New Member


Date Joined May 2011
Total Posts : 7
   Posted 10/31/2011 9:04 PM (GMT -6)   
Hi Mandy

yes none of this is easy. your dad is still sooooooooo early on only 2 weeks. i am going crazy with this all after 9 months now 24/7 bowel management with little to no change. I am in LA now going to Cedar Saini's where they have some great colorectal specialists. looking for answers and solutions. i am glad i could help you out a bit with what i have learned along the way. it seems to be one big trial and error process with everything. but i tell you if your dad's bottom is burning it could very well be from the bile coming from his gallbladder and the ONLY thing that helps that is the Cholestramine powder. if its a diaper rash thing, that is entirely different and many different ointments help with that.

hang in there..i need to tell myself that every single day!!

mandy70
New Member


Date Joined Oct 2011
Total Posts : 2
   Posted 11/2/2011 9:54 PM (GMT -6)   
Hi Sudeha,
Thanks for your advise I will look into the burning butt. I know it is early days but any advise that may help us would be great. Like you I have read all posting over the past 3yrs and have found them to been a great help. We have just tryed the medamucil it did bind the poo, there was no diarrhea and it stop that burning feeling in his butt, but was up all night going to the toilet. As I have said before this site is great, I know I can get on here and ask for help or any advise that might help my Dad.

We will hang in there as we are not alone!!!

sudeha
New Member


Date Joined May 2011
Total Posts : 7
   Posted 11/2/2011 10:38 PM (GMT -6)   
so if his butt still burns absolutely check into him getting and taking the Cholestyramine Powder. The burning at least mine i found out after 4 miserable months of burning is from the bile from the gallbladder. and because i have a shorter transit time due to only 2 feet of large intestine left the bile gets in there into the stool and burns so so bad. if i take this powder even an hour lat the next day i will burn for hours and no pain pill, no ointment or anything will stop the pain. its from the bile. and this powder is a resin that binds the bile. as far as ointments the best one i have found as a barrier so the diarrhea does not burn is from Coloplast called "Clear moisture Barrier ointment. also Calmoseptine ointment is thicker and has some mint in it to cool the anal area. use a kleenex to get it off your hands before washing the hands. i promise it makes it a lot easier to get these off your hands. I am getting all kinds of tests this week in Los Angeles. my colonoscopy yesterday showed negative. tomorrow i do the breath test to check for bacteria overgrowth which i know will be negative. and friday i am having yet another cat scan. but this machine my doc. said is rare in that it can show the inside of the small bowel to see if there is any radiation damage causing a partial blockage at all which she said could be contributing to the massive diarrhea that i still have 1 year and 9 months later! i too am up ALL NIGHT constantly going to the toilet. i am so so so tired of all this and want my life back. i was so active and a healer for many others and i am at my wits end trying to find a solution to why i have such awful bowel incontinence and still have diarrhea. I had been taking heaps of all kinds of great supplements and herbs for all kings of things, enzymes for food digestion, herbs to help heal my intestinal lining, amino acids, pancreatic enzymes, vitamins like vitamin D3, Vitamin B12 and various other ones. my doc asked me to go off ALL herbs and supplements to see if any of them are contributing to the diarrhea. so i am now on day 2 of no supplements so we will see what shows up. hope you dad can rest better tonight. its a crazy long night when this happens, i know all too well for too long!

Be well

findingmyway56
New Member


Date Joined Dec 2011
Total Posts : 3
   Posted 12/7/2011 10:23 PM (GMT -6)   
Just found this site thank God ! On november 22 2010 I had rectal surgery,ileostomy then two months later ileostomy reversal.I thought that I would be back to normal in no time boy was i wrong.I went back to John Hopkins were I told them about going for ever having bits and pieces as I called them which is cluster bowel movements I believe at which time I was told I needed to get dialated which I had done twice so far but I still have cluster bowel movements three to four times a week.Thankf ully they come at night from dinner time to two or three in the morning.I also just had surgery for a hernia that was a mess about a month ago. I feel great most of the time but the clusters are really getting too me.Can you tell me what the MD Anderson Bowel management program is or if anyone has any suggestions. Thanks

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3073
   Posted 12/9/2011 8:39 AM (GMT -6)   
Findingmyway, this is an old post and a lot of people on it don't post regularly any more. It might help to start a new thread so people don't ignore it because it's old.

Sorry I don't have any info on your specific problem, but welcome to this list. It has been enormously helpful for me.
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.

findingmyway56
New Member


Date Joined Dec 2011
Total Posts : 3
   Posted 12/9/2011 10:50 PM (GMT -6)   
Looking for information on cluster bowel movement can anyone direct me to what sight may help me. Thanks ps what is a thread,new to all this

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3073
   Posted 12/11/2011 7:48 AM (GMT -6)   
Look for the button on the left above the posts that says post new topic, w/the plus sign on it. Be sure to put a specific subject line in (you can include that you're new too).
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.

Willetta
New Member


Date Joined Nov 2011
Total Posts : 14
   Posted 1/15/2012 2:33 AM (GMT -6)   
There are so many posts on here that I will have to continually look back and refer to it later. I am having my ileostomy reversed in two weeks. January 27th to be exact. I have nine inches of colon left. I am really scared! I want to get back to work in a month..Apparently that is too soon to hope for. :(
I really like being able to go to this if I need help. I love the marshmellow Idea as well..I hope all of you heal up quickly..Is anyone on disability because of it??

wickedwo
New Member


Date Joined Mar 2012
Total Posts : 1
   Posted 3/8/2012 3:37 AM (GMT -6)   
Hi all. i had a stoma reversal. 5 weeks ago yet i still have real bad tummy ache and need to go to loo all the time. is this normal.
please advice as not much happening when asking the doctor.
thank you.

Butterfly500
New Member


Date Joined Jul 2012
Total Posts : 1
   Posted 7/17/2012 9:39 AM (GMT -6)   
Hello, I just found out I had colorectal cancer. The surgeon said I would need a permanant colostomy. I am starting research to look at whether I really have to have that done...or if the surgeon doesnt really want to try hard enough..idk.

peggy donnelly
New Member


Date Joined Oct 2013
Total Posts : 1
   Posted 10/1/2013 11:04 AM (GMT -6)   
Thank you to all of you for the information above. I had a reversal of my ileostomy 4 weeks ago. The gas pains,nausea are brutal.
I've been drinking Gatorade, water, V8 juice, cranberry juice to hydrate.
My rectum(J pouch) does get sore so I use barrier cream with relief.
I eat chicken ,turkey, seafood, fish. Beef, pork are very hard on my digestive system, so stay away from that.
Vegetables are few- beets, carrots, potatoes, rice.
Take one teaspoon so far, of Metamucil 3-4 times a day.

Anyone have any other suggestions? hints>
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