Need help with post take-down diet - severe diahrrea

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.

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

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

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)