When can you eat normally after a Reversal Ileostomy?

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Angel Baby
Regular Member


Date Joined Mar 2006
Total Posts : 50
   Posted 4/17/2006 3:23 PM (GMT -6)   
tongue  Hello Everyone!
 
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  sad 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! scool
 
Angel Baby

Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 4/17/2006 7:22 PM (GMT -6)   
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.

Cathy

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5409
   Posted 4/19/2006 9:52 AM (GMT -6)   

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
 


lifebegins
Regular Member


Date Joined Jan 2006
Total Posts : 72
   Posted 4/21/2006 11:00 AM (GMT -6)   

Hi Angel

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.


Angel Baby
Regular Member


Date Joined Mar 2006
Total Posts : 50
   Posted 5/1/2006 8:27 PM (GMT -6)   
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.

Thank you and have a nice evening!

Angel

Ashl
New Member


Date Joined Jan 2006
Total Posts : 18
   Posted 5/25/2006 1:06 PM (GMT -6)   

Hi Angel Baby,

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!!

Ashley


Angel Baby
Regular Member


Date Joined Mar 2006
Total Posts : 50
   Posted 6/11/2006 8:50 PM (GMT -6)   
Hello Ashley!
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. 
Angel

jbc
New Member


Date Joined Feb 2007
Total Posts : 3
   Posted 2/24/2007 6:01 PM (GMT -6)   

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!

Stompe
New Member


Date Joined Aug 2007
Total Posts : 5
   Posted 8/2/2007 9:33 AM (GMT -6)   
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

dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 8/2/2007 4:29 PM (GMT -6)   
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
 
 


uncle sam
New Member


Date Joined Oct 2007
Total Posts : 1
   Posted 10/9/2007 3:29 PM (GMT -6)   

Angel

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.

 

May God Bless,

 

Uncle Sam

tahoet
New Member


Date Joined May 2008
Total Posts : 2
   Posted 5/27/2008 2:20 PM (GMT -6)   
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.

Thanks from Tahoe
tahoet

EAdair
New Member


Date Joined Jun 2008
Total Posts : 1
   Posted 6/25/2008 8:45 AM (GMT -6)   
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!

tahoet
New Member


Date Joined May 2008
Total Posts : 2
   Posted 6/25/2008 9:18 AM (GMT -6)   
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

Defiant
New Member


Date Joined Jul 2008
Total Posts : 1
   Posted 7/3/2008 4:23 AM (GMT -6)   
Hi Folks,

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)


macbeth
New Member


Date Joined Oct 2008
Total Posts : 1
   Posted 10/20/2008 8:53 PM (GMT -6)   
Hello everyone nono
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
Let me know if you have some success

Blossom28
Regular Member


Date Joined Oct 2008
Total Posts : 47
   Posted 10/29/2008 10:18 AM (GMT -6)   
Hi All,

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 . . .

Thanks for all of your good advice!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3069
   Posted 10/29/2008 11:26 AM (GMT -6)   
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???!!!

Good Luck on the 3rd and let us know how it goes.

Blossom28
Regular Member


Date Joined Oct 2008
Total Posts : 47
   Posted 10/29/2008 4:18 PM (GMT -6)   
Thanks Ohio . . . I will try to post a new subject line tomorrow.  More later!!

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1955
   Posted 10/29/2008 8:41 PM (GMT -6)   
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.

Mary/marsky

mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 10/30/2008 5:56 AM (GMT 0)   
cool   cool cool Anglebaby I had my reversal in June and I still have diarrea every day.Once in a while it will have a LITTLE form to it but not very often.Ask your DR. if you can try the imodium befor taking it.I toke it for a little while so that I would not have so many BMs a day(10to20).I only go 2 to 3 times a day and I know that it will be about 1/2 hour to hour after I eat most of the time.It also gets better after a while because its not such a urgent need to go right as soon as you get the urge to go.There are things that I know is going to make it a little worse if I eat it so I only eat it if I am going to be at home.I would not worry about the wieght untel it gets closer to 100 because it should even out when you get the diarrea under control.You might even gain a little.Also make sure that you take a childrens chewable vitamin.Your body will be able to absorb more of it then adult pills.GOOD LUCK. cool cool cool
Lost half of my small intestine.Ilieostomy for 5 months then reverst,Nerve damage to right leg,part of my right hip bone removed,Cronic pain,hernia,infection in my back called discites,and depression.Mother to 9 kids 7 boys 2 girls and 1 stepson.4 grandsons,9 grandaughters.4 of my grandkids I inherited from my twin sister who passed away 6 1/2 years ago from a blood clot after surgery.God has given me my life back after I almost lost it.Even though its a painful and sometimes hard road to walk I take it one step at a time and give thanks to god for every step I take.


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1955
   Posted 10/30/2008 6:40 AM (GMT -6)   
Also, Centrim (sp?) makes daily vitamins in liquid form. I couldn't take any pill after my reversal and I took these vitamins for a year or more. You can take the smallest dose until your system is used to it, working up to the full adult dose amount. The liquid is light yellow in color and has a citrus taste. Look for it near other vitamins.

While I was recommended to take Immodium, it's never really put a dent into my situation. What has helped me the most is eating a very specific way and limiting solid intake, as mom9mom pointed out. Plain, bland food and timing is everything in my case. I fast for specific events (traveling in the car, social outings, etc.). I stop eating about 4 hours prior to these examples and before fasting, I make sure I ate well and had good portions of food (a yogurt cup, a banana, etc.). Then when I arrive at my destination if traveling or when the social event is over, I return home or a hotel and eat again. Then the whole cycle starts up but at least I am near a bathroom again. Even though there are bathrooms at the social functions I occasionally attend, I never want to tie up a bathroom stall with numerous bm's. I just find that by fasting, I don't even have the bm's, I just stop them - naturally. My motto is - no input, no output.

When I fast I make sure I keep my fluid count up though. So I don't become dehydrated.

I walk a very fine line with all of this and you will learn to walk your very fine line too. It just takes time.

Oh, one more piece of advice - learn to say NO, and do it in a nice way also. I learned this trick early on. My former ostomy nurse receives the credit for this approach - she said to never apologize for my situation and never to do anything I didn't feel comfortable with. Back then I was still a stay at home mom of 2 girls, 4th and 7th grades by this point. I had been chairing two PTA positions before my cancer was diagnosed. 6 months later, the calls began, the PTA wanted me to chair more committees. I said no, I'm not up for that. And I kept saying no to be honest. I knew what my limits were and I knew I could no longer put in the long, long hours these positions required. After a while, they began calling other moms. Did I feel bad - at first but then I remembered my ET nurse's advice.

I've never apologized since if a situation doesn't meet my needs. I don't expect other people to change plans on my account but I don't feel bad if I have to decline an invite.

People with normal colons will never, ever, in a million years understand any of what we all go thru. That I know is true - 9 years later.......I used to try and educate them. I no longer even try. My own immediate family doesn't even understand fully what I go thru. They understand as best they can but they even have trouble understanding where all this stool is coming from. I weigh 120 lbs and am a size 8. I eat lightly and all the plain foods on my diet. Yet, I go and go and go. I keep telling them - hey, I have no where inside my body for the stool to back up. I lose them every time I say my reservoir is gone now.....so I just say - I need a bathroom. A lot.

The only living creature who does seem to get it is my Golden Retriever! She is my bathroom buddy.......in fact my favorite room in this house is my powder room. Turns out it's her safe haven too!

I wrote you a book......sorry. It does get better but it takes time.

Mary/marsky

Beebub
New Member


Date Joined Dec 2008
Total Posts : 1
   Posted 12/4/2008 6:04 PM (GMT -6)   
Can any of you help!!
 
My mum has just come home after 13 weeks in hospitial.
 
Story in short.  Diagnosed with colorectual cancer in Feb and in June started 8 weeks of radiotherapay and introv Chemo.  On the 9th of Sept she has a temp stoma and this was nothing but trouble and due to other complications she had no choice but to stay in hosp.  two weeks ago they said all was healed and well enough for a reversal.  They failed to tell her that she would not return to normality however they did say that radiotherapy can damage insides and cant be sure how much control she would have.  But her anal tone good and good muscles tests.
 
Its been two weeks and for the past week after finally bowels starting she has had constant diarheaa since Sat so 5 days and it hasnt stopped at all its relentless.  they have given her a medication to take twice 4 times a day but no change.  Im really really worried this is not normal can anyone help!!!
 
xxBeebub

psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 12/4/2008 7:48 PM (GMT -6)   
Hi Beebub,
I have had a total colectomy in august where they attached my small intestine to my rectum. I had constant battles with diareah. At the beggining, I found I had constant diareah. I was going 20 + times a day for a few weeks. I noticed that there were alot of foods that would make it worse. On average, If i ate something I can tolerate would go 5-6 times within an hour after I ate a certain thing. After that, I was done until the next time I ate. Than if I ate something I caould not tolerate, I would go constantly 8-10 times an hour throughout an whole day or more. I kept a food diary by doing this: every time I ate something, if I went to the bathroom my average 5-6 times within an hour after I ate and I was done after the hour until I ate again, That means I can tolerate that food. If I ate a food, and then constantly went to the bathroom non-stop,8-10 times an hour for a long period of time, even if it was 2 hours or longer, than means that my body has an intolerance to that food, and means I have to avoid it. That worked for me, but even though i was going my average, my BM's were still watery and runny, though. So my doctor told me to take Metamucil. The Powered form is the best because it help bind the BM's a bit. So I started taking it. It took a couple of weeks for it to work, but now my BM's are now formed alot more, and I do not go as much, and when I go, It is now alot more formed, not hard, but soft formed and not runny or watery at all. As long as I eat the foods I can tolerate, my bM's are doing well. Unfortunately, If I eat the foods I don't tolerate, I still get watery and/or constant Diareah and BMs that last for a full 24 hours. I hope this help you alot. I know this helped me alot. Good luck with your mom and yourself, and I hope all goes well.

Deflepchic
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/10/2009 5:31 PM (GMT -6)   
 
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. They did an emergency take down. Things went better, but within one day I sprung a leak again and went in for my 3rd surgery. This one took it's toll. I spent 4 days in ICU. I lost 3 of those days which I cannot remember a thing! This time my heart reacted to the stress of the surgery. My legs swelled and they thought I might have a clot either in the legs or a pulmonary embolism. On the 10th day in the hospital I pleaded to go home for Thanksgiving. 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. 
 
The incision has finally scabbed over and I'm am off the IV's. I tried to eat more solid foods on Christmas, like tiny bites of turkey and stuffing, mash potatoes, cranberry sauce. Well that was a huge mistake. I had severe pain in my guts, sounded like a thunderstorm. Diarreha, which is mostly all I have anymore, multiple times a day. But I started to have blood in my stool. Scared the hell out of me since my doc was on vacation. Apparently my intestines cannot handle any thing more than mush to eat. Talk to my doc yesterday, he said only soft foods, like pasta and mash potatoes, soup, and  a boost drink 3 times a day. Nothing solid at all. No meats or veggies or fruit. I still have shooting pains and my incision hurts. I cannot see me ever having real food again. He thinks where he reattached is still not healed and it bleeds if anything big comes down the pike. I am so worried about another leak or it coming apart with all I have been through. He keeps on saying that I will have a hernia, I WILL NOT GO THROUGH ANOTHER SURGERY! Not to mention my Cobra insurance which my mom has been paying for at 600 a month runs out. It has been a long and tramatic time for me since I am a single mom with a teenager who has Cystic Fibrosis. 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!  shakehead
 
I am so frustrated, but it's good to see that you all have had trying times and I'm not alone. I just wonder when it will all end and I will be normal again. Not sure if I will ever be able to eat the foods I love. I guess I will need to come to grips that may never happen. 
 
I'm thinking I need to find nutritionists that specializes in intestinal issues. Is there such a thing? My doc is a general surgeon, I don't thnk hes fluent in these matters.
 
Thanks again to all of your posts!
 
 
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