When can you eat normally after a Reversal Ileostomy?

I was diagnosed with rectal cancer in May 2008. I had pre-surgery radiation and chemo in July and August of 2008. My miracle surgeon was able to remove my rectum and the inner muscles and 9 lymph nodes. He reattached my colon and gave me a loop ileostomy. A followup with the assistant surgeon made me realize how blessed I was. He told me that 95% of the world's surgeons would never have tried to reattach me since the tumor was so low down. A previous surgeon back in June 2008 had told my chemo doctor that he was going to remove the rectum and give me a permanent colonostomy and there was no need for pre-surgery chemo or radiation. I had refused to accept that and applied to Mayo Clinic here. So glad that I did. I am presently finishing up post operative chemo as an insurance policy so the cancer does not come back. Then 4 weeks after chemo is done I hope to have the reversal surgery. It's good to hear of some of the type of foods to eat and what not to eat. I have to be on Lomotil and/or immodium now even because I do get diarrhea via the ileostomy bag. I have to remember to keep hydrated. Two weeks ago I was in the hospital because the diarrhea had lowered my potassium. It made my heart race but at least I had found out my heart is in good condition, I have no blood clots anywhere, and a previous scan showed I had no cancer anywhere.
I am so grateful that this bag situation is a temporary one. It's been since early October that I have had to live with this. Another struggle has been that while I was going through radiation and chemo, my full time job laid me off. How heartless they were. I am still looking for a full time job. I have paid March rent but have nothing for April. If you believe in God, please pray for me that I find a job very soon.

Deflepchic and threedgrad--welcome to the forum!  Although a little late for Deflepchic

You have both been through a lot, but this is a great place to vent and learn about the new you!  Please remember that you will receive more answers to your posts if you start new threads.  I am afraid that you might not get the answers you are looking for if your questions are attached to older ones.

 

Deflepchic, to me it almost sounds like you need a new surgeon. Something's wrong if you have to keep going back to correct mistakes. I was so blessed to find my most talented and wonderful surgeon at Mayo Clinic here in AZ. Now I had rectal cancer and he was able to reattach my colon with only 1 cm of cancer free colon at anus area. Most surgeons want 5 cm. But I did (and still have) a complication. One of the sewed areas had the stitches dissolve before they cut was healed. After I was home from surgery I had nurses coming daily to pack the wound. It actually split further open because of the packing. So we left it to heal on its own. Now 4 1/2 months later it has not healed. But I cannot have surgery on that area until I am 4 weeks past chemo. I am not sure if doctor wants to sew that area up first before we do ileostomy take down. I will see surgeon in mid March and point out that my bottom area never healed. He may want that area totally fixed and healed first because once colon is back in use the risk of infection to the newly sewn cut. Or he may do both the take down and sewing up the unhealed area at the same time and load me with anti-biotics. We shall see.
Deflepchic, don't say no surgery - just find a better surgeon.

Eileen in Phoenix

This community seems to be full of courteous and helpful people. Thanks.

I had my reversal one week ago and developed a distended abdomen shortly after leaving the hospital 3 days ago. My surgeon's assistant said that he thought it was bloating, but I really don't think it is. He also mentioned that a small leak in the ileum could be the cause, since I have no other symptoms. Maybe gas was escaping from the ileum into the abdominal cavity. The only way to know was to take an x-ray to see if there was space in the cavity. Tomorrow I'll go see my family doctor to ask him for the x-ray. It kinds of makes sense, because after coming home I had bean soup twice and I have noticed that I am not expelling gas from the rectum. I hope the leak resolves as the ileum heals and the gas, if any, is somehow absorbed. It's interesting, because, besides the usual diarrhea, I really feel fine.

Luis

Just a quick reply to Luis,

This may seem kind of random but I was just reading my daughter's PA magazine and the symptoms for Postoperative Ileus sounded just like yours. It's been a while since your post so maybe you've been diagnosed and all is well or at least on the way to well. I had my reversal in early February and am still having some difficulty with looseness. I also had a sphincteroplasty and those issues are topping my reversal's at the moment. Good luck to all of you as life gets back to normal or maybe doable is a better word!

Penny

I have 3 weeks left before I go through my ileostomy take down surgery. I am really, really looking forward to getting rid of this bag after 7 months. I know there will be a lot of diarrhea and other issues after surgery. I will stick to a diet and medication to help bulk up the stool. My question is - how much warning time do you have before you have to run to the toilet? Do you have to wear diapers? I wore diapers even with my ileostomy bag awhen I went to church or work, just to insure I was safe in case of a leak. Even now I have had diarrhea with this bag on and off since October of 2008.
My life has changed so much since I was diagnosed with cancer. A good thing is that I have lost lots of weight so that I can fit in my good suits and dresses again. But I did lose maybe 50% or more of my hair due to the 5FU chemo treatments. Funny, my chemo doctor thinks that the oxyaliplatin is what causes hair loss or thinning. I read all the little print in the oxy brochures and they mentioned a study with my group - after surgery chemo people - that says thatb 28% of people on 5FU had hair thinning and when you are on both 5FU and oxy the number went up to 30% hair thinning. I only had 3 treatments of oxy in December 2008 and my reactions were terrible - I could not feel my hands as soon as I left the chemo office after my 3rd treatment. After that my doctor stopped the oxy treatment So any of you who had hair thinning with 5FU, how soon did your hair start to come back in? I had hair just past my shoulders and I have not cut it. My ponytail is so very thin. I hope my hair comes back soon. Take care everyone and I hope not one of you have to go through cancer ever again. God bless!!!!

Most of the people that had an ileostomy reversal can eat normally, but there are some foods that you must take a little bit of care with. This topic is rather large and there are lists of foods that are best to eat and some that can bring you harm.
I made such a list and I have put other usefull tips on my resource that is dedicated to ileostomy reversal .

Hey Mike

Welcome to this forum. I hope your post containing the link is within the parameters of HW rules.

I must compliment, the site created by you is very informative. I am sure everybody out here, and the families and friends of Ostomites would find it very helpful. Quit impressive. I must appreciate.

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45 years Male Attorney

Hello to all. I am new to this website. I had an ileostomy Thanksgiving 2008 and just had the reversal done 10 days ago (4/21/09). The reversal surgery was a piece of cake compared to the first surgery where a foot of colon stayed with the surgeon at the hospital. I complained to my doctor this past Monday that I had no bowel activity after four days at home from the hospital. As it usually goes, when the activity came it came with a vengance. My poor bottom was raw. The surgeon said I had no diet restrictions but obviously there must be some foods to avoid or some foods that I should make sure I am eating. I ate almost nothing yesterday to try and alleviate some of the cramping and non stop bowel leakage. I appreciate all of you who have been through this ostomy process. The first thing I learned was that you can live with it. Also, I was an idiot to wait until I was 66 years old to have my first colonoscopy. If the posts from this forum were mailed to those age 50 or over advising colonoscopies, I am sure there would be fewer of us ostomates.  

Had ileostomy reversal April 27, 2009. Burning butt, ring of fire, raw skin, very unpleasant.  It doesn't seem to matter what I eat, I have frequent trips to the bathroom and a constant sense of having to go/urgency.  Only been a few weeks, hoping that things get better. Only sure-fire way I've found to avoid issues is to not eat.  Sleep is scarce, quality of life is poor, wish I could fast-forward and get over this already. Went from severe ulcerative colitis (15 blood infusions of about 30 units in the course of two months) to the post-surgery issues I have now. As I type I have had several urges to go to the can and haven't eaten in about 18 hours.  Everyone is different with their recovery, but it seems that time will help get me to where I want to be. Here's to hoping...

 

 

Have any of you who have had rectal cancer also had the inner rectal muscles removed? I have had those inner muscles removed - the ones that are right outside the rectum near the anus. Outside of these muscles is a layer of fat and then another ring of muscles, which I still have. So now with the ileostomy gone, I do have to be extremely careful what I eat. Dairy intake has to be very small as does orange juice. Also I do practice the fasting before bigger events. So my control issues are more complicated than some others who have been through this. I do not have a J pouch; it's a direct attachment. The surgeon removed about 8 inches of the rectum. He was one of the few surgeons who was willing to try to reattach me because the tumor was so low.
So besides watching what you eat, does it help to time when you eat? Say should you stop eating before 4pm or maybe even earlier? Or just eat after you get home from work because once you eat you stimulate the colon to start shooting stuff out. Also things have improved with the the consistency of the stool; most are formed now, 5 weeks after takedown. But the stools are very small, sometimes like pebbles. Did any of you experience this? When I mentioned it to the surgeon he nodded his head. Also I do have to wear diapers and I don't know how long I will have to do this; maybe forever. But the surgeon said most people who have control problems after the ileostomy takedown would rather wear diapers than get a permanent colostomy. My surgeon did say that I should see significant improvement during the next 8 weeks. I hope so. Also have any of you done exercises for the muscles in the anus area to build them up so you can control the bowels better?

Thank you. I don't know where else I could even discuss these issues and not feel totally embarrassed.

Eileen

Eileen - I had a malignant tumor located in the rectal area (barely inside), 1 inch in size. It was removed 10 years ago. My surgeon removed 90% of the sigmoid/reservoir area, 15 inches of colon above it and reattached me. Like you. I had a temporary colostomy for 8 weeks. It's been 10 years now and it's still a struggle. I have multiple bm's, small in size and amount, thru out my entire day, as long as I continue eating. Early on, I benefitted from a plain, low residue diet and 4 to 6 small meals a day. But then I had to return to a more normal routine (I had been taking college classes during the day while my daughters, 4th and 7th graders at the time were in school themselves). The goal was to obtain a bach. degree by the time my oldest went to college. It never happened! I couldn't get thru a full day or even half day of college classes. My early on great routine/diet habits were ruined by several semesters of classes myself. Long story short, I quit and stayed home again, recovering, trying to find that one approach to managing my situation. 10 years later I'd have to say I have this about 75% figured out. I still have very bad days, even after watching my diet, keeping my stress level low, etc. I am working part time (got a job 4 years ago, our daughters are both in college, I gave up trying to get a degree my myself). So that's an improvement. But I will never, ever be normal again (ie, one big dump a day, eating anything I want to again.....those days are over).

I manage my situation now by a combination of several things 1. diet (very important), 2. reducing stress as much as possible (saying no to certain social events if I am not comfortable attending them), 3. exercise (walking on a treadmill is what works the best for me, I can easily stop it to use the bathroom if I need to) and 4. Colace (a stool softener, I take a low, pediatric dose amount). I tried both powder and pill form fiber supplements, the thinking from my doctor was to bulk up my stool, recreate an internal new reservoir of my colon that was pulled down by stretching the walls of it each time I had to go but this never worked AT ALL! I was miserable. I can actually feel that I am very different now inside. My new doctor (original surgeon moved out of town) drew me a diagram of what my new lower colon is like compared to a drawing of what a normal colon should look like. A normal sigmoid/colon bulges out and can allow a lot of stool to back up and collect, without pressure or pain. My new lower sigmoid/colon area is very narrow, my doctor needs to use a pediatric speculum now to examine me, that is how narrow this area of my body now is. So consequently, I could see why stool just keeps coming down and I have such pressure to go. The walls of this new sigmoid area cannot stretch like the old one did and I need to go - a dozen, 15 or even 20 times a day. Small pebble like bm's sometimes, but usually they're the size of oh a walnut? Not large like they used to be. So basically I'm saying I'm a straight pipe now. If I keep eating I can feel the stool higher up slide down and then I need to go. I can hold it, but 30 min. seems to the longest and I have such pain if I hold it. You'd think it was a lot I was holding inside but after that individual bm the amount was so small. It always amazes me such a small amount of stool could make me so uncomfortable. Then of course 10 min. later sometimes, more slides down and I have to go again. What most people do not get if they see me struggling like this is why don't I just stay in the bathroom and go all at once (like I used to). In other words, just finish up. Well, it's just not that easy! Believe me, I've tried that. Sometimes I do stay in the bathroom but stand up, allowing for gravity to let more slide down and then I go again. But after oh 30 minutes of this you just want to wash up and go back out to watch TV or do chores around the house. At least now my family gives me this one bathroom in the house, I've used it so much the toilet is on it's third set of parts. And they know sometimes the urgency I experience is intense, I am running to get there sometimes.

You may experience the significant improvement your surgeon is hoping you will. I will hope that for you as well. But if not, remember you can manage all of this. I have been doing so for 10 years now. It's not been easy, oh my gosh no, but it can be done! My entire goal since accepting the fact that I go all day long, is to keep my stool as formed as possible (not messy, not D) and be able to use a public bathroom without trouble. I've gone everywhere! The grocery store, the mall, restaurants, even portalets. I know where every bathroom is on the face of the planet (it seems like!). Never thought my life would revolve around a toilet but it does. Once I accepted this fact and then decided, okay how can I make these bathroom visits more normal (releasing these small in amount bm's each time) did I manage the situation better. Once I let go of any hope of returning to having one dump a day, eating anything I wanted was I able to look at things in a more positive way. Now I'd have to say that for the most part I just accept things as they are and do what I need to so I can work part time, leave my home for social events, have fun outings with my family. You'll figure all of this out in time too.

I would highly recommend keeping a food diary/journal. Keep track of every single thing you eat and drink each day and also if you take meds. By doing this you begin to see what foods agree with YOU the most and then you can begin eating those particular foods the most. And avoid the ones that mess you up. That's how I somewhat perfected my diet. But it took about 2 years of faithfully keeping the journal to get to this point.

Wishing you well.

Mary

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Marsky/Mary's story.....
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening

All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!

Post Edited (Marsky) : 6/9/2009 7:21:40 AM (GMT-6)

 hi just had reverseileostomy on july1st. cant eat much. going to bathroom very often. . very bad burning and meds not helping  for pain getting bad headaches from them. like hear if this going go on for a while. am eating but  dont want to. cause dont want go to b,r to much this all new to me but heard this site can help me. cope  thank you  makay

Thank you Thank you Thank you all so much. I thought I was going crazy with all the problems after my surgery but now I see I am not alone and it is normal to have diareaha etc . I have good days and some really bad days. But this info on here I think will really help me a lot. thanks again , Jeepgal

Hi All,

Angel, did you have this surgery due to colonic inertia, a paralyzed colon? Thanks, Tracy

Hi Everyone,

I have a permanent ileostomy. I was seriously injured in a pelvic floor "restoration" surgery. On medical review I found a scan was mis-read and I didn't have a sigmoidocele in the first place. (That's an internal hernia of the sigmoid.) After they did the unneeded removal of my sigmoid, my colon strictured (narrowed in at the joining) to only 4 millimeters. My surgeon did not address this. Also pelvic muscles were scarred and my rectum no longer could straighten for defecation as it could prior to surgery. They also messed with my bladder and vagina that were not prolaspsing. Raising those raised them too much. This team of surgeons gets paid per procedure as you may have guessed. Not just accidental errors, but out and out bad medicine. All the scarring scarred in my small bowel so I was unable to eat for 7 months due to recurring obstructions and fecal vomiting. My original issue was (as it turns out on med review) simply a rectocele (bulge in the rectum) which trapped stool and needed fixing. I am "dealing" with all this if you know what I mean. On the personal side of things, I would have died if one surgeon out of 11 I consulted nation-wide had not stepped forward and done what needed to be done, lysis of very thick adhesions on small bowel and permanent ileostomy. It can never be reversed; due to all my damage I wouldn't be able to "go" if it were taken down. BUT my heart goes out to those of you with all the watery diarrhea that would give real butt burn if you just had small intestine connected to rectum or just a tiny bit of colon left. For me with permanent ileo, it was 9 months before I didn't "dump" into the bag 10 minutes after eating. It takes awhile, so take heart. Buy lots of PRep H and zinc type rectal ointment. Good Luck. I do however envy the take-down aspect of your situation after your first year goes by, you should be well and happy. Best wishes. esoR

Hello everyone,

HALLO EVERYONE. 2 YEARS AGO I HAD AN ILEOSTOMY REVERSAL AND AT FIRST I WAS IN THE BATHROOM WITH 20 OR SO B.M'S. A DAY. I WAS DEVASTATED BECAUSE I WAS NEVER TOLD THIS COULD HAPPEN. THICK BLOODED STOOLS JUST SHOT THRU ME AT FIRST THEN THE BLOOD DISAPPEARED AFTER A COUPLE OF WEEKS. I COULDN'T GO OUT AND I WAS SO WEAK. WHEN I CAME OUT OF HOSPITAL I WEIGHED LESS THAN 6 STONE. I WAS 8 B4 THE TROUBLE. I WAS HOOKED ON BEING BY THE LOO AT ALL TIMES. I WOULD GO AT LEAST 10 TIMES A DAY, BUT, 2 YEARS LATER THINGS HAVE CALMED DOWN, THO MY BOWEL CAN WAKE ME UP AT NIGHT AND I RUSH TO THE LOO, SOMETIMES DON'T MAKE IT THO! ALSO, I GET CONSTIPATED AND HAVE DIARHOEA AND I CAN SPEND ENDLESS TIME IN THE LOO. WHAT I WOULD LIKE TO SAY IS THAT I CAN LIVE WITH IT AS I KNOW MY OWN BODY NOW. AS I SIT HERE, I FEEL THE NEED TO GO BUT I KNOW I WON'T BE ABLE TO, (FEELING CONSTIPATED NOW). I TAKE CODEINE PHOSPHATE, IMMODIUM, AND DRINK HYDRATING DRINKS WHEN D HAS BEEN BAD. WE MUST NOT GET DEHYDRATED AS WE WILL FEEL LISTLESS TO THE POINT OF COLLAPSE AND CANNOT FUNCTION MENTALLY. VERY IMPORTANT. DON'T WAIT UNTIL YOU ARE THIRSTY, U MAY NOT EVEN FEEL THIRSTY.
ALSO IT DOESN'T SEEMS TO MATTER WHAT I EAT, ONE DAY I CAN HAVE CURRY AND BE FINE, ANOTHER TIME I AM REALLY IN TROUBLE. I GET REALLY HUNGRY AND NOW JUST EAT WHATEVER I FANCY AS I CANNOT PIN POINT THE FOODS THAT TROUBLE ME. I TRULY BELIEVE THAT THE PROFESSIONALS DO NOT UNDERSTAND WHAT WE GO THROUGH.
IT HAS BEEN GOOD TO READ THE POSTS HERE AS I THOUGHT IT WAS JUST ME HAVING TROUBLE. I DO HOPE THAT WE CAN HAVE A LOO-FREE DAY AT LEAST ONCE A WEEK. AAAHHH!!

Hi yellow daisy, I hope it works for you look forward to your replys, good luck i hope you get a lot better.Yours John 

MANY THANX JOHN.

Hello,