Need help with post take-down diet - severe diahrrea

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becky5980
New Member


Date Joined May 2008
Total Posts : 4
   Posted 5/10/2008 10:57 AM (GMT -6)   
Hello everyone. This is my last hope. Please help me help my husband.
 
He had the j-pouch surgery due to ulcerative colitis ~1 year ago with an illiostomy. The take down surgery was ~11 weeks ago. Since then, my husband has experienced severe diahrrea. He is taking all kinds of narcotics to help slow the motility includnig valium, opium, lotmotil, benefiber, etc..
I get concerned because he continues to drive, work and attempt to function, not to mention the concern about the addiction issues we will eventually have.
 
It has not been helpful and only caused drowsiness. We both believe that diet and timing is essential to get a hold of this situation. He has horrible diaper rash to the point that his bottom is raw and he can no longer wipe - he needs to shower to get clean. He is stooling up to 30 times a day! He uses a good moisture barrier combined with a lidocain cream, but this only provides temporary relief.
 
Can anyone help us out with a diet that will help tighten up his stool?
 
Has this happened to anyone else?
 
Our lives are truely impacted by this condition. Please help i you can.

Ash83
Regular Member


Date Joined Nov 2007
Total Posts : 128
   Posted 5/10/2008 11:14 AM (GMT -6)   
Hi Becky,
 
I'm sorry to hear of the continuous suffering both you and your husband are going through. It's so hard, but you're lucky to have the support of each other to get you through these rough patches.
 
 
As for thickening things up a bit, I would go on a strict "bulk up" diet. Bananas, white breads, protein(chicken, turkey), peanut butter, marshmallows(rice krispy treats), and pasta are just a handful of things that will create some substance. Have him stay away from dairy, soda, juice, caffeine and high doses of sugar(also beware of Sugar Free products, they promote diarrhea). All of those things will speed your system up and contribute to the diarrhea.
 
 
What does his diet consist of right now? Has he tried Immodium? Make sure he gets in plenty of Gatorade/Propel to replenish the electrolytes he's losing everytime he makes a trip to the bathroom. Also warm sitz baths should help heal his bottom.
 
 
Definitely keep in close contact with his surgeon to keep him updated on his prognosis. If he continues to decline after changing around his diet, I would consult with him about what should happen next. Nobody should have to live the way he's living now.
 
Best of luck to both of you.

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 5/10/2008 12:22 PM (GMT -6)   
I would highly suggest the bulk up diet too. I had a temp ostomy after rectal cancer 9 years ago. I have been left with multiple bm's each day. My entire goal is to keep the stool formed, easily passed since I have anywhere from 12 to 20 bm's. Small amounts each time. I went on a low residue diet post-take down and have never looked back. My doctors approve of this diet. If I were to eat high fiber, whole wheat products, lots of raw and fresh fruits and produce, I'd be a real mess.

I feel my best when I eat 2 cups of vanilla flavored organic yogurt a day (Brown Cow is my favorite brand right now, found in the health food chilled section of my local Kroger's), am and pm, bananas, plain foods such as turkey subs on white bread, chicken pot pie, baked or broiled chicken or turkey, fish such as halibut, haddock or salmon, cottage cheese, white rice, applesauce, pretzels, Club Cracker saltines with salt (they are the best!), Pepperidge Farm Bordeaux cookies (for some odd reason they add bulk), plain english muffins (Bay's, found in the refrigerator section of the grocery), plain bagels, plain cereals such as Cheerios, Rice Krispies, Special K w/o fruit, Corn Flakes, etc.

I would also suggest he keep a food journal, writing down every single thing he eats.

I also feel best when I don't bombard my system with 3 large meals but rather 4 to 6 small meals through out the day. 2 crackers, 2 pieces of cheese, 2 grapes, or half a banana, for examples.

Avoid carbonated beverages, soda, strong coffee or tea, although I find weak, mild hot tea soothing to my gut, go figure....

The foods I avoid now are - any whole wheat product, fresh berries (blackberry, red raspberry, strawberry), fresh pineapple, chocolate, chewy candy, nuts, spicy foods, salads with fresh baby greens, nuts, dried fruit. Iceberg or romaine salads are okay, but in moderation.

Just do a google - low residue diet - you'll find lots of info.

Finally, stress is important too. When we have a very busy schedule, I usually get very messed up. The two go hand in hand. So I have perfected the art of saying no. If invited to an outing that I know is impossible for me to attend, I politely say no, I'm sorry, I have other plans. Even if those plans are sitting on my couch, cuddling with my hubby and dog, watching a movie, etc. I just don't overload my calendar and definitely know my limits now.

I wish him my very best. I thought my life would be over, post-temp-ostomy. I would have 3 bm's during each meal. As soon as I chewed, I had to go. I joked I'd taking my meals in the bathroom from now on. Here I had been on the healthy high fiber, fresh fruit type diet and I was a real mess. The low residue diet literally saved me from having to retreat from the world. I faithfully stayed on it for 2 years. I was able to go places and take trips with my family. But I had to stay on that diet.

Keep thinking of more things I did back then, I stopped eating right after dinner each night. If were hungry in the evening, I would have 2 tall glasses of water, tricking my stomach into thinking that was food. I did this so I could get a full night's sleep without having to get up for more bm's. It worked. I slept great. I in turn refrained from meals for social outings (weddings, long car trips), but would make sure I ate well earlier in the day or when I got home. I learned that timing of when to eat and not to eat, greatly helped me also.

I still have a hard time socializing with large groups and eating a meal. I usually pick at my food and then ask for a doggy bag. They all think I'm not hungry, when truth be told I was starving, but I didn't want to take a chance on putting all that food into my system. I wish I could just tell people I can't eat in public. But then you have to go into long explanations with people who have normal colons. So I order light portions and nibble. Faking it really.

Mary/Marsky

PS - this is a random comment, but my family is into watching old seasons of Survivor. On several players have been known to say they didn't have bm's for a week or more. One player said he hadn't gone in 2 weeks. All he was eating was white rice and fish. I just looked at my family and joked - I'm going on Survivor! Seriously though, lately I've been making 1 cup of Minute Rice each day for lunch. It takes 5 minutes in the microwave and 5 minutes to cool. I add a little margarine and salt. It doesn't taste great but it does thicken things up. Just a thought...

Post Edited (Marsky) : 5/10/2008 12:31:51 PM (GMT-6)


becky5980
New Member


Date Joined May 2008
Total Posts : 4
   Posted 5/10/2008 1:32 PM (GMT -6)   
This is the BMing husband and I just had enough time to get off the pot to say thanks for the input on my output! I am miserable and have resorted to lidocaine cream to make my bottom able to be sat on. I feel like I spend more time in the bathroom and do not sleep at all. My diapers get filled frequently and then shower time....luckily we have a handheld shower massage that I can use as a boday (sp?). My 2 biggest complaints at this time are the frequency of the BM's 10-60/day plus the pure rawness of my bottom. I also have spasms like I had when I had the colitis with little to no warning that they are coming and when they hit...they stop me dead in my tracks. All I can do is focus on not soiling myself. they pass and then 30secs-5 mins later the same thing. I have been fairly good about sticking to my diet but I cant take all the meds prescribed b/c they put me to sleep. I am on Tincture of Opium, Straight Codeine Sulfate, Lomotil, Benefiber, and cholestrtyramine, plus a handful of other meds for other symptoms including a low does prednisone. My pharmacist is amazed I am awake at all, much less driving. Any and all input is greatly appreciated and I am thankful, I have such a supportive wife! Thanks to all! Robert

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/10/2008 5:52 PM (GMT -6)   
frenchfries always thicken up my output, also bananas and breads.
i found that if i eat apples or soemting like corn flakes or veggies or something i have alot more output.

Did the DR tell you why you were having such a time with your j-pouch? i have heard it can take along time to get to "normal" but this seems very extreme to me.
maybe suebear will happen by she might have some good advice.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 5/10/2008 6:19 PM (GMT -6)   

This frequency is a little high for 11 weeks post op but it will get better.  First, for relief of his butt get some calmoseptine ointment.  It's an OTC product but not widely available.  If you have a drug store that sells ostomy supplies they will have it.  If not you can order it online at www.calmoseptineointment.com  Another terrific product is Ilex which is also available online.  I would give the calmoseptine a shot first before resorting to the bigger gun of Ilex.  Second, he needs to keep a food journal and track his input and output.  I discovered that I had higher frequency when eating anything with wheat in it.  I developed a temporary intolerance to wheat but after six weeks of a no-wheat diet I could eat it again.  According to my surgeon a temp wheat intolerance can be a problem after abdominal surgery.  I am not suggesting your husband has this but tracking his diet will help.  Stick to foods like protein, rice, canned vegetables and fruits.  Completely eliminate sugar and carbonated beverages.  Sugar makes stool looser and will increase frequency.  Carbonated beverages will increase burn and cause excessive gas.  Finally I recommend your husband check in at www.j-pouch.org  That website saved my life post surgery.  With over 6000 jpouch members he is sure to get some good advice from seasoned pouchers and meet others who are going through what he is.  If you can get his butt in the bath several times a day that will help too.  I found bathing to be very soothing on a sore butt.

It will get better but he needs to measure his improvement in months, not days.  The first year of recovery is challenging, two steps forward and one step backward.  As long as he learns what to expect it will make both of your lives easier.

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


becky5980
New Member


Date Joined May 2008
Total Posts : 4
   Posted 5/11/2008 4:30 PM (GMT -6)   
Thank you all for you great advice!

It has been almost a day and a half on the new "bulk-up diet". What a change! My husband is commenting that now he actually has to push a bit when he goes versus "peeing out of his butt" as he refers to it. He even said that since he has not gone so much his bottom actually is feeling better.

We know this is only the start - but what a turn around. All of you had great input. We made a list of bulk forming foods and he made some choices. We have incorporated at least one of these foods at every meal. I believe that he again feels empowered and hopeful.

We will keep you all posted on his progress. It has been nice to know that others have suffered and we are not alone. I have a tear in my eye as I write this and get a bit choked up to know there is help out there and support. I wish I had taken this proactive measure sooner.

Thank you to all. You have all made a difference in someone else's life.

Rebecca

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 5/11/2008 5:48 PM (GMT -6)   
I was having so many bm's post take-down I literally thought any normal routine I once had was gone forever. I had two young daughters back then, 8 and 11 who wanted to have a fun summer, going to the park and community pool. When I went on the diet I could take them to the pool but I recall carrying a chair over near the women's restroom, just in cash I had to dash in there. A few other moms knew what I had experienced and said - oh you need to be near the restroom? I would laugh but this was how my summer went, just 6 to 8 weeks post take down. In time things did get better.

I should back up a bit, my surgeons said to "eat anything you want" but possibly in smaller portions, 4 to 6 small meals a day. That was IT for advice on diet. Can you believe it? Here I was eating the cancer prevention diet - fresh berries, Brownberry whole wheat bread, bagels, rolls, muffins, and eating bran cereal on top of that! I was like your husband, I had the peeing out my butt too. I was literally raw back then.

Then I spent some time on the computer, found a colon cancer survivor message board - Mediconsult if anyone here remembers it, it lost its funding and the members all dispersed to other boards - I would devour topics, learning all I could. Someone posted about severe D who was going thru chemo. Their symptoms were my exact symptoms. The advice they received was to go on the low residue diet. I clicked on links to this diet, and after reading all the foods I should be eating, I felt like I was coming out of a fog. I went grocery shopping the next day and started the diet. 100%. Went off the fresh berries and pineapple, whole wheat products, etc. Within 48 hours, I felt great. The stool was formed. I started the journal, so I could keep track of all I ate. Later I learned other patients do this too. I would record every thing I ate or meds I had taken. If I had a few M & M's, I wrote down how many. I determined I could have 5 a day, but not the entire individual bag. One Hershey candy bar lasted me almost a week. I would break off small pieces but never, could I eat the entire candy bar. Those days were gone.

So this is how I stumbled upon the diet. It's the second thing that saved me - first my colorectal cancer surgery and then the diet.

A few weeks after going on the diet, I had a check up with my surgeon. I told him about the diet and how bad things had been (D, multiple bms all day long). He paused and grew very, very quiet. Didn't say a word for about 3 minutes. I had made my mind up then and there if he said to go off this diet I was going to lie thru my teeth and say sure thing doc, not.....LOL But he finally said - "you know what Mary, that diet makes total sense to me! Stay on it!" I let out a huge sigh and said what about long term, etc. He said not to worry about long term, just to do what it took to be as normal as possible. I did gently suggest he tell his other post surgical patients struggling with severe D to consider the diet. The foods on it cannot harm us, they just don't offer as many nutrients as whole grains or fresh produce do. But to be flat out honest - I say phooey to that. These docs, family members, coworkers, friends, who all think we're just ship-shape, back to normal, after surgery have absolutely NO IDEA what we go thru! I used to attempt to educate them. For at least a few years I did but I would lose them when I'd tell how many times I go a day. They just stopped listening and couldn't get past that little detail. Then I'd explain oh it's the same amount, but spaced out all day long. Again, I'd get the blank stare.

Now I don't even bother trying to explain any of this, to anyone. I provide as few details as possible. I might say - oh I need to eat small meals or plain food. They might say - oh because if you don't, your stomach bothers you? May God forgive me, but I let them think it's my stomach. When in fact, it's my wacky colon! Which will never again be the way it was before surgery, cancer, etc.

But anyway, I am glad to lend support. This entire site is a wonderful, safe haven. I hang out over at the IBS board, since my symptoms are more IBS like.

I do wish there was an actual, in the flesh colon cancer support group in my area. But there's not, many for breast cancer but not colon. Finding websites and message boards such as these are just God-sends. When your whole day to day living and routine is literally turned upside down.

Rebecca - I wish your husband well. If I were him, I'd go on the foods on the bulk up or low residue diet list, 100%. Even if that means eating meals the rest of the family doesn't want. Stouffer's makes lots of meals that are on the plain side - turkey, mashed potatoes, pot pie, etc.

Mary/Marsky

Post Edited (Marsky) : 5/11/2008 5:54:11 PM (GMT-6)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 5/12/2008 7:01 AM (GMT -6)   
Please let your husband know that a limited diet is temporary. He should be able to eat anything he wants after the intial period of adjustment. My diet today is about 95% fresh fruit and vegetables, whole grains, and dairy. I eat very little protein (by choice) but I do have a sweet tooth and do imbibe in chocolate every week. Some pouchers will have some foods that they cannot tolerate even after time but do continue to experiment. If it doesn't work well today try it again in a few weeks or months. Don't think that you cannot enjoy the foods you did pre-surgery.

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

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