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, 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

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

Deflepchic said...

 

Hello all of you. I am so lucky I found this site. Not getting the info I need from my surgeon. It sounds like most of you knew exactly how you were reattached and where. I have had severe Diverticulitis since March. In and out of the ER, put on antibiodics, which never helped. Had a colonoscopy, 10 CT scans and no one knew how bad my sigmoid colon was. Untill the day the surgeon went in to see how bad things were. He took out 18 inches of colon out Oct, 22. He tried 3 times to reattach, but air leaks kept on happening. Needless to say I woke up with a Ileostomy. I was to have a take down 6-10 weeks later, only to have my Stoma retract into my abdomin 3 weeks later. In one weekend I went through 17 colostomy bags because they would not stick or fit with out leaking within an hour. My skin was raw and torn.  Only to have stool leaking from my incision 2 days later. Back into the hospital. Apparently I had a fistula leaking with a Staf infection. They put me on heavy duty antibiodics with a pic line. Tried a wound vac on my incision. I oppted to go home with IV drugs to do at home for another month. 

 

. I haven't work since this all started, I got fired from my job due to the surgery. There is no way I could work. I tire easily and can't do many physical things. I am still on a nothing diet. I lost 20 pounds and continue a couple pounds a week. I can afford to loose the wieght, but I have no strength. I need to get back to my life before I loose my home! 

 

 

 

Hi Deflepchic

Welcome to this forum. I am sure you would find the people out here very encouraging and helpful. I am extremely sorry to hear about your pain. Infact, you have revived my memories of agony and pain which I have gone through with all the complications.

You will be surprised to know that I have gone through each and every complication which you have mentioned. Infact, much more than that. I have a big incisional hernia, horse shoe fistula always leaking and communicating with my j pouch and what not. Anyway, life has to be lived to its fullest and one should never loose patience.

Only diet I can have is home made cheese with home baked bread (chappati). No fruits, no salads. I can have yogurt.

Lost all the clients, office and other good things in life. Still have my will power because of the encouragement from members on this forum.

TC

PS 

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.

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...

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

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

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

Hello everyone,

Just wanted to mention immodium for those of you with recent reversals. I used it for a few days after the reversal and it helped until I could eat a more normal diet. Now I'm on bran buds with phyllum (sp?) and Activia to help bulk. My main issue is leaking from a sphincteroplasty I had in '07.

One thing that might help Mary is a quick water enema to help clean out a little more at one time. Maybe it would give you some extra minutes of peace. I was doing that early on. Now I use a cotton ball after going and that keeps me from leaking onto my skin. When I feel something I replace it but things are usually done leaking in a few hours so I take my shower and by then don't need another cotton ball.

Good luck to you all. I never knew what we could tolerate until i went through these surgeries and reading your posts I see a lot of courageous people.

Take Care,

Penny

Hi i had my reversal done in december 2009, Had two weeks of BB and on the loo every hour ,I eat anything now and sleep allnight the reason for this is my doctor gave me FYBOGEL its in a sachet and you mix it with water i take it twice a day,Its a natural fibre drink and make your toilet more firm but soft to pass so no more BB,My haemorrhoids have allmost gone anyway no pain or itching i still go to the loo 6 or 7 times a day but i am in control. I hope this is of help to you all, good luck for the future.John      

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 

Hello,

I had my take down on 03-19-10 and was scared out of my mind. Not knowing what to look forward for recovery. I was excited to say that I did well after the surgery and was sent home 5 days later. I am now home and trying to figure out what I need to eat to keep regular. I had my ostomey for a year and and do realize the body has to start working again. At first I had great bm felt wonderful, right after I got home. I have been eating pretty much the same foods to see how it is working for me. Some days is nothing but diarhoea and other days better stool. I go to bathroom 5-10 times a day.  I am eating peanut butter, grilled chicken, soups and lots of pasta and some cheeses. I do like to have some wine with dinner. Does not seem to cause any other complications. I just want to know if I will be able to have more control as time goes on and should I eat different foods to determine what will work for me. Good luck to all and may we all have a successful recovery.

Sincerely,

Jan