It has been approximately four months since my Reversal Ileostomy and seven months since my subtotal colostomy and I still cannot eat that much such as milk products (cheese, sour cream, butter, ice cream), peanut butter, certain cereals, shrimp cocktail sauce, mustard, fried foods, Chinese/Mexican/Italian or Polish foods, potato chips, seasonings, salad dressings, salads, and even soda and beer just to name a few because the end results are diarrhea and horrible hemmorhoids. However, all I can eat is salmon, shrimp, lobster, crab legs, tuna fish, and turkey breast lunchmeat and I drink lots of water even when I eat these foods, I have to eat small portions approximately six times a day. I am trying to gain weight because since my Reversal Ileostomy, I have lost 20 lbs (down to 113 lbs and 5'4) and still losing. Just about everything that goes in comes out quickly. I am taking Lomotil six times a day. I was told it could take possible a year or more to feel better. However, anything is better than what I had to go through just to have a BM for the last 15 years. Inaddition, I am extremely weak, fatigue all the time, yet I cannot sleep.
My question is "when actually does this all go away and have normal bowel movements instead of being afraid that everything you eat might turn into an episode of diarrhea?"
Your replies will be very much appreciated. Have a nice day!
Hi Angel- It's been about 10 weeks since my reversal. I lost most of my weight loss after the subtotal colectomy- 27lbs. I've gained about 10 back and eat everything. A few things give me diarrhea and a burning butt. Salads move very quickly through me.
Remember that water reabsorption doesn't happen like before, and the acid level of the stool is different now. The stool burns more thus the burning butt and hemorrhoids. I have been using Tucks at night, and prepH towelettes for post BM wiping. They seem to help. Zinc oxide cream helps too with the irritation. You're list of can't eats is too long and doesn't make sense. Peanut butter is an absorber and should bulk up your stool, potato chips and cereal too. The Polish food I understand and chinese food runs through me quickly also, mexican-stay away from the chilis and beans, but the rest should be okay. Italian (Pasta) is an absorbant food, I've had good luck with it.
I had serious insomnia post surgery. Seemed like nothing helped. Valium 5mg finally helped and now I only take it occasionally.
I hope that I've been of some help, Angel. We generally say 6 weeks until you feel fairly normal again, but you're way past that.
You might want to switch from lomitil to Imodium. Sometimes one works better than the other. Are you taking Metamucil? It will provide bulk, if you opt for the powder follow the directions on the container but only use about 1/4-1/2 cup of water. Many people like the wafers better but you could experiment.
It took about 6 mos for me to eat fresh fruits and vegetables without them speeding through my system. It takes time for the body to slow down. Some foods work better than others, peanut butter made me worse as did applesauce, however others have had great results with them. Keep a food log. Try new foods, if they don't work, try them again in 2-3 weeks. Log results. Eventually you should be able to have a full and varied diet. I live on fresh fruits and vegetables now but it took a while to achieve this. As for weight loss you can try bulking up by using powders or drinking high calorie shake drinks. They make them dairy-free so you should be able to tolerate them.
Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
Sorry to hear you are having these problems. I had the reversal ileostomy 10 weeks ago just like Cathy and I eat everything.
Certain foods like salad and chinese do go through a bit quicker, and curry and chilli do cause some bottom burning for a day or so, but I still eat them. I take 10ml of immodium syrup before bed but thats all.
Have you seen your doctor about this? Maybe he has a different medicine you could try to stop you going so much. I was told when I left hospital that eatting marshmallows sometimes helps slow things down.
I wish i could be more help. Let us know if you have any luck.
Lifebegins
Had UC 2002 - 2005
Meds: Prednisolone, azathiaprine, asacol, fosamax, predsol suppositories, asacol suppositories, predfoam, painkillers, aloe vera juice, special diet ect.
Whole colon diseased, annemia, dhydrated, weight loss ect.
Had 1st operation April 2005, 2nd operation February 2006.
Feel great, aged 29, married,want children now.
Everthing that is crossed out no longer applies to me thanks to the operations.
Thank you everyone very much for your replies and suggestions. I sincerely appreciated the advice that all of you have given me and I will try each method.
I had my ileostomy for 20 years..I am now 20, i also had my surgery 4 months ago. I had the ileostomy since i was a week old so things are taking longer for me to slow down. I still go from 8-15 times a day but that is a lot better than it was when I first got home from the hospital. I'm not really in pain anymore so that's good too. Here's what i do that I think really helps. I take 2 imodium quick disolve tablets with breakfast and two with lunch, then three with dinner and three before bed. It gets expensive since they arent prescription but it helps so thats what I have to do! I tried lomotil but it actually made things worse. My mom read up on it and learned that there is an ingredient in lomotil (cant remember what its called) that for some people causes them to go to the washroom more instead of slowing it down. So please try the imodium it works wonders for me. As for dairy causing you to go more, you should get checked out to see if you are lactose intolorent..i talked to someone who became LI after their reconection..it has something to do with not having the colon anymore.
As someone else stated, marshmellow are really good..they help slow things down with me and they taste good! I stick them on a fork and roast them over a candle haha..it takes a while but they taste better that way!
Also, i'm having problems with weight gain as well but I was resently told to have a slice or two of bread or toast with every meal because thats really fatening. Becuase I can't eat fruits or veggies due to high fibre content, I've been taking 'One a day', its a vitamin suplement for women and i've had a lot more energy since I started them.
Keep me posted on what's going on..I think we're close to in the same boat!!
Thank you for replying to my question. How did you go for 20 years with an ileostomy? Three months felt like a lifetime for me. I could not believe that the procedure my surgeon described to me could become so complicated and almost causing me to die from blood clots around my kidneys. All I kept asking everyone while in tears being wheeled down to the OR "Why am I being punished? I had the best surgeon and he was to protect me from harm. This was not supposed to happen to me. I trusted my surgeon that he would perform a complicated free surgery. Instead my surgery lasted 9 1/2 hrs day 1; another 5 1/2 hrs day 2 for ER Surgery. Needless to say, I ended up with the ileostomy inaddition to open surgery on day 2. I prayed that my recovery would be fast and healthy. Four days before Xmas I had my ileostomy reversed. But no one ever stated that I would become Lactose Intolerant, no carbonated drinks just plenty of Gatorade and Propel Water with Calcium. I eat Butterball Turkey Breast with little mustard sometimes four times a day, because that does not go through me. I found butter called Smart Balance and ice cream called Scoops and I drink Soy milk which does not give me diarrhea. One of the replies I received stated that I should eat marshmallows to help slow down the diarrhea process. I used to eat Skippy Creamy Peanut Butter on Special K waffles with butter and syrup, now I can't because of the Peanut Butter; but I think Smart Balance came out with a Peanut Butter that is lactose free as well. My Psychologist suggested Smart Balance to me. I do drink lots and lots of fluids to keep me hydrated. I have not been to work since September 2005 because of my surgeries and slow recovery periods plus trying to learn how to control my bowels. I had a post op appt with my surgeon last week, I told him that the place where my ostomy was hurt when I was trying to go to the bathroom. He thought I developed a hernia that was all I needed. Thank goodness I did not have a hernia. He said see him in six months for a scope test to make sure there is no scar tissue building up. I told him the reversal surgery was my last surgery for the rest of my life. I keep on praying that having this surgery was the right thing to do since I suffered for over 15 years of chronic constipation. And I hope to learn how to cope with my reversal and start to control it instead of it controlling me in which I want to live to be 90 years old.
As far as fruits and veggies, difficult for me too. I place very little shredded lettuce on my sandwiches which is okay. I eat salmon, canned tuna fish in water, shrimp, lobster, halibut, Alaskan King Crab Legs no problem. Small portions at one time six times a day. No creamy, buttery mashed potatoes, but I eat sweet potatoes (mashed) sometimes even baby food jar bananas, veggies, sweet potatoes, etc.
Keep trying a little bit at a time and if it doesn't work for you one week, try it again a few weeks later. Keep a daily journal of what you eat and what happens when you eat that food.
Again, thanks for the reply. And I hope you feel 100 percent better.
Hello jman...I'm new here. I had my take down on 1/17/07 due to a tumor on my rectal canal. I have a j-pouch and of course no rectum. Do you also have a j-pouch? I had the same sypmtoms as you did the 1st couple weeks and now I'm ok but I go the bathroom 5-6 times a day and it's been roughly 5 weeks since my take down. In your email can you be specific when you said "after a while I started to notice changes and now I'm perfect" how long from take down did you started to notice changes and that you're perfect? Can you give me a timeframe? I'm getting depress over this...I felt a whole lot better with the temp ileo. Please advise..
Thanks,
jbc
jman6890 said... Hey there is hope!!! Believe me, i had that darn illiostomy too and i had it reversed and after words i felt HORRIBLE!! MY stomach was killing me and i called my doctor up said I Wanted to have the iliostomy put back on becuase i was hurting so bad and going to the bathroom non stop. He told me it takes a while for your body too adjust to the new way it is now. So after a while i started to notice changes, now im perfect. I have no problems whatsoever and would never noticed i had the surgery other than the ugly scars. So just give it time and relax , watch movies and take it easy! Hope you feel better really soon!
Hiya, seems a useful, sociable site here and wondered if you can help me. I had my loop ileostomy take down three weeks ago. To my relief everything went well apart from a big distended belly. The consultant told me not to worry, especially as the the bowel is working well. I would love to know if anyone else has suffered distention after an operation similar to this. Hope I'm not going to look 4 months pregnant for much longer? Would be great to hear any similar experiences before the worry takes a bigger hold! Thanks, MY
I ad my ileostomy reversed 6 weeks ago and still have diarrhea too. I am concerned about certain foods only due to fear of blockage also afraid to eat foods that use to make my Crohn's disease flare up. Tonight Iam actually going to make pasta salad for dinner (pasta, italian dressing, tomatoes, and spinach) I know it will go through me fast but I use to have trouble with constipation more so than diarrhea with my CD. I eat things like rice, mashed potaotes, chicken, pasta, (meat) ravioli..if you can stand chef boyardee or franco american canned pastas they have at least 7 grams of protein per serving a serving being half of a can...I have burgers, english muffins...lots of things but still staying away from high fiber foods. I do take 1 metamucil capsule at bedtime to help with bulking up my stool. Some days I have 7 BMs (seems to be smaller amounts) or some days just 2 or 3. I am glad that the incontinence of the bowels has cleared up for me no more waking up and seeing that I messed myself haivng to clean everything including my mattress. Usually the odor of my gas signals me that I will be having a BM very shortly if not any second which I found to be helpful (as long as I can get to a bathroom). I have lost weight since my surgeries however I am now at my "normal" weight like when my CD was in remission.
I am concerned though my neurologist has me cutting down on my elavil which I wanted to do being that I want a family in the next year or 2 and I rather slowly go off the med than the normal 3 months being that I was on 100mg a day. I used it as migraine prevention but just beig on 75mg I notice my appetite is coming back and I dont want to gain more weight (I am 4' 9.5" and currently weigh 103). My neurologist also gave me ambien which my surgeon had mentioned before. I had many complications with the 1st 2 surgeries this year and this 3rd one (reversal) has gone pretty well with only 1 minor complication. My left side is extended more than my right side since I no longer have any large bowel on my right. Even my surgeon added extra sutures (staples then added 7 nylon sutures) due to known abdominal distention and that I was on prednisone at the time as well caused my staples and sutures to stay in me longer than your average patient.
Things will get better and never be afriad to write down pages of questions for your dr so you dont forget any, trust me my Dr was use to seeing me go thru 3 pages of questions every couple of days at first.Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
I had a little over a foot of my colon removed in April ... it was the sigmoid or last part of the colon.During the time I had the ostomy I learned that peanut butter, applesauce and bananas were helpful and marshmallows were a life saver.For weeks after the closure of the ostomy and until 6 weeks ago no one had told me this is the part of the colon that de-hydrates the stool so I had a terrible time with diarrhea.I now start the day with peanut butter on an English muffin and take a product similar to Metamucil (Colon cleanse made by Health Plus sold at GNC and it contains pure psyllium husk) in capsule form.The purer the product the fewer capsules you have to take.I take these capsules every time I drink or eat and swallow them with as little water as possible.Think as if the capsules are little sponges.I have found that the key is to absorb the excess liquid in the colon with foods that bulk up and to take the psyllium to absorb the water that I drink with the meal.On occasion I need to take an Imodium to increase the liquids that my colon is absorbing or eat 4 marshmallows to slow down the flow through the system.I increased the number of capsules until my stool became sluggish and then decreased the amount of capsules until it was not enough and then found a happy medium.I also decreased the amount of liquid but started to become de-hydrated so then I started taking one or two capsules with each glass of liquid I would drink between meals.I also found that if I exercise, sit in a hot tub or do anything that makes me sweat it triggers the colon to absorb more liquid and I can drink more.
This is what is working for me and I pray that this is some help to you.
uncle sam thanks so much for the useful info. Just had my reversal 3 weeks ago and find I am pretty much house bound unless I take immodium, the savior. I find it clogs me up and then I worry about being constipated. I am taking raw physillum now but will add some capsules during the day to help keep things under control. Love the marshmellow idea from others. This site will be very useful in the coming weeks to manage all the effects of the last surgery. At least we don't have to feel alone in this journey. Other questions: how does one handle bike rides and long hikes. I live in Tahoe and we are very active here. Would appreciate any suggestions anyone has.
Hello, I had my ileostomy reversal done in December. I am relieved to read a lot of the posts here to see that I AM normal in my recovery process. I haven't paid as much attention to what I was eating in regards to bulking up, nor the water. I, too, didn't stray far from my bathroom for the first few months and the Lomotil didn't seem to work as well as the Imodium. I had been working from home since June of 07 due to the rectal cancer, chemo, radiation, surgeries. I thought once the ileostomy (had it for 4 months) had been reversed all would go back to "normal" fairly quicikly. My doctor told me it could take up to a year, and for some reason I thought maybe in 3 months...okay, the doctor IS right, thus far! I did return to work in the office about 3 months after the reversal - once I knew I could comfortably leave the bathroom. I have had only one accident at work, and thankfully it was minor and was able to leave and go home to fully clean up. People talk about using Depends, however the clean up isn't something that's easy, as there isn't storage available for wipes/plastic bags/extra underwear. I will make a better effort to watch/control what I'm eating and I think the marshmallows are a good idea for snacking at the office. I had also been trying to do the 6 meals a day, and my biggest meal seems to almost always be at lunch. I am grateful to have this site to "talk" through, as this isn't something that is fun for any of us. Humor is key to healing as well. I have great support from family and friends...just some things they cannot understand, so I thank all of my new friends here!
Hi EAdair, Thanks for the response, it is always good to hear from someone who has gone through the process. I have found some relief from the very loose stools by taking psyhilium husks powder in almond milk 3 times a day. That has really added fiber to my diet and made my life easier. I am now working on retraining the colon to act like a rectum. I guess that is what takes so long. Sports: I am a very active person and have been happy to get back to the gym and out biking and hiking. The wildflowers are spectacular and I made a great 13 miles hike the other day. I find eating 6 small meals a day works good as well. however my favorite things are off the list for now since I get a bad reaction from them. Diet: All Fruits, vegetables, nuts ( miss them dearly) chocolate. I guess the huge piece of chocolate moose cake was just a bit too much the other night. Well it was worth the 2 days of suffering after. Maybe a bit or two next time. Any suggestions would be greatly appreciated. Tahoet
I am three months after my Ileostomy Ileostomy reversal. Its good to read all the posts above and realise that you are not alone in suffering. Fot the first few weeks it was unbearable - toilet 10-15 times a day. But as time passes it does get easier. I get days now that I don't go at all and other days that things go out of control again and I'm back to 7 or 8 times. It seems to vary with me - often times dirrehea can occur for no reason at all. I do use imodium but only when I need too. When the dirrehea comes I take 4 tablets together to try to stop it as quick as possible and then a further 2 every couple of hours until it stops. I could then go three or four days without taking any and while I would be borderline constipated I still wouldnt be in trouble with it. I like my few pints and thats the hardest thing. I can still have the pints but it is the biggest factor in bringing back the dirrehea. I would generally take immodium before and after the few drinks and most of the time that works but not always. Curry was another favourite of mine but thats a big no no now - its just not worth it. I just said I'd give a short account of my experience so far after getting so much information from the above posts. I don't know i its of any benefit to anyone but hopefully it is.
Post Edited (Defiant) : 7/3/2008 3:26:31 AM (GMT-6)
I'm new to this site but found it very interesting to read all each of you have gone through.
I had rectal cancer January 2007 - operated on and had an iliostomy until February 2008. I have been through most of what you have all gone through. As an oldie and a Registered Nurse for 35 years I got totally frustrated with doctors, nutritionists etc ----who didn't really seem to understand what I was going through - I sort of got the impression that we should be grateful we were alive and stop complaining.
So - I got to doing trial and errors on food etc.
My most recent find - which is working really well - is Metamucil - 1 large teaspoon before breakfast - lunch and before bed. It's not 100% but is pretty darn good to what life has been . Still have to get up during the night - but - no diarrhoea .I'm eating pretty much everything - a few things blow me away -like dark chocolate - although milk chocolate is fine.We are all different but I though it was worth putting this here - hope it helps someone
I am scheduled to have my ileostomy reversal on Monday, November 3rd (only 6 days away!!) . . . and YES, I have already voted (USA).
I have two-thirds of my colon still, and they will attach my ilium to that . . . I have had the ileostomy since last January (10 months). Do you all think I will have a terrible time with diarreah, even with most of my colon intact? I have only asked for 6 weeks off from work . . .
Blossom28--welcome to the site! I wanted to suggest that you start a new thread so that your question will get the attention it deserves!
To answer your question, 6 weeks should be enough time to recover...reversals are easier than the first surgery:) As far as the BIG D, that will depend on you, your diet and how your body responds to the "new" you! Wouldn't it be easy if we all responded the same way???!!!
I had rectal cancer in 1999, temp colostomy, 90% of my sigmoid removed, 15 inches of my colon removed, my gall bladder taken out and I've been left with multiple bm's every single day since (12 to 15, small amount in size but spaced through out my day as long as I continue eating). After my takedown surgery I returned to my normal diet (high fiber, fresh fruit, etc.). I was a mess and I mean a real mess. My doctors said to eat anything I wanted, to enjoy life and maybe take Immodium. Thank goodness for the Internet! I found a colon cancer message board, a patient posted with symptoms just like mine but from chemo and another member suggested going on a low residue diet. I did a search and found many links, even 9 years ago, google or whatever search engine we had at the time found a lot of links. I printed these diets, went on the diet, and within 48 hours I was a new person. I could leave my bathroom, I could actually leave my house!
Long story short, I went on that diet and followed it faithfully for 2 years, keeping a food journal also. I still follow this diet about 75% of the time. Quite simply, it is the way I have to eat now.
The foods on it make so much sense when you are having D and your insides are inflamed, irritated, etc. Bananas, applesauce, plain english muffins, bread (white bakery bread is the best), plain yogurt, mashed potatoes (for some odd reason instant really agrees with me over ones from scratch), turkey, chicken, saltines, pretzels, white rice, etc. In other words - the BRAT diet.
My doctor approved of this diet and actually said it made complete sense for me to be on it.
Hello Everyone!
diarrhea and horrible hemmorhoids. However, all I can eat is salmon, shrimp, lobster, crab legs, tuna fish, and turkey breast lunchmeat and I drink lots of water even when I eat these foods, I have to eat small portions approximately six times a day. I am trying to gain weight because since my Reversal Ileostomy, I have lost 20 lbs (down to 113 lbs and 5'4) and still losing. Just about everything that goes in comes out quickly. I am taking Lomotil six times a day. I was told it could take possible a year or more to feel better. However, anything is better than what I had to go through just to have a BM for the last 15 years. Inaddition, I am extremely weak, fatigue all the time, yet I cannot sleep. 
