Colectomy gone wrong, followed by sigmoid colectomy ... colon seems asleep ... comments?

Long history of IBS.  Long history of diverticulosis.  Hospitalized with peritonitis September 2010.  Fist-sized abscess found in colon via colonoscopy.  Surgeon performed colectomy in November to remove abscess and stapled colon shut using 25 mm staples except for a pinhole stricture, undetected until lower GI, but was in ER for GoLightly prior to lower GI diagnostic.  Then gastrographic analysis.  Then 3 flexi-sigs which partially opened up colon.  Found colorectal specialist surgeon who said there was still more diseased diverticulic tissue in addition to pinhole stricture and he performed sigmoid colectomy and also found colon wrapped around appendix and did appendectomy at the same time.  That was in February 2011.  One year later, I still cannot use the bathroom properly.  Have researched all over the web.  Have been following an IBS soluble-fiber diet but it is not working now except for very tiny formed stools with a lot of gas.  Also diagnosed with GERD and Barrett's esophagitis in fall of 2011.  IBS soluble diet is also okay for GERD and esophagitis, but if I eat more than 10 grams of fat at one time, I have gastroparesis-type symptoms.  Am on Amitiza, which helps some, but it hits unexpectedly.  Am severely limited as to what I can do, where I can go, what I can eat.  Very depressed and worried about the future.  Disabled prior to this situation due to being bipolar and having severe degenerative disc disease.  Going to fourth gastroenterologist in another city next week.  I now suspect colonic inertia to be my diagnosis since it was 3 1/2 months between first and second colectomies and I had all those metal staples were in my colon all that time.  Have since been to three gastroenterologists that have been virtually useless.  Read about Amitiza in health newsletter; my PCP started me on it.  Have not had tests for colonic inertia, so cannot say that this is a definitive diagnosis.  I am ready for a colostomy after what I have been through with bloating, slow stomach emptying, highly restricted diet, long periods of fasting except for water, occasional required milk of magnesia for complete emptying which takes 5-8 hours to become at least comfortable, Amitiza which is helpful, tiny formed stools that have occurred up to 15-20 times per day, and then on other days, nothing but constipation and gas.  Have used fennel tea to no real avail.  Oh well.  Just thought I would post and see if anyone had any thoughts.  One person highly recommended hypnosis.  Have been in terrible stress in home situation that I can tell worsens my digestive system.  Sometimes I just think I will smoke and smoke and hope for stomach cancer and refuse treatment since my stomach lining is metaplasic, and I was told it could go to dysplasia if I don't stop smoking.  I have removed coffee/caffeine, carbonated drinks, gum chewing, red meat and fried foods, other fats like mayo/butter/chocolate, most insoluble fiber (like salads), as well as all citrus/tomato products/peppermint/etc. for GERD.  Any comments appreciated.  Thank you.   

Thank you so much for your reply. I will look at the ostomy forum. I do know about them to some extent, having been a registered dietitian before becoming disabled. And I have had a friend with an ostomy in the distant past, but fortunately, medical science has come a long way from what she went through 35 years ago. I am missing most of my sigmoid as well, and about 13 inches of my colon above that, so we have some similarity there. I really do thank you for responding so quickly. I am willing to face whatever has to be done. I just want to be sure that the right surgeon/specialist does the right thing since it does affect you for the restof your life. Marsky, thank you so much for reading my very long first post out here.

Marsky, I apologize for not getting back to you sooner. The day has been quite complicated with my elderly parents who just got back from a short beach vacation. First, I cannot imagine that you have been doing this for 13 years. I am just now entering year 2. My heart goes out to you, and your fortitude is ever so great.

I know exactly what you are saying about stool consistency. UGH. If I stay on the IBS diet that I found on another website before I found this one, I have very small and horribly frequent formed stools, followed by the mushy type that you speak of where you go through so much TP that it is unreal. Several years ago, my parents started used flushable baby wipes, and that is what I use 99% of the time when I wipe myself, but additionally, when the stool is so unbelievably messy and mushy I soap up my hands like you wouldn't believe and get in the tub and run the cold water and clean myself that way, and then clean the tub with clorox. That way I don't end up with a bloody rectum from all that wiping, even using baby wipes. Sometimes, I get tired of using the tub, and I have to use as many as 20 baby wipes to become clean and flush 5-6 times since you cannot flush even "flushable" wipes without causing toilet backup and need to flush only about 4 wipes at a time.

When I go "off" the soluble fiber diet, and cheat because I just want something else to eat, it causes severe constipation, and I have to use Amitiza and then usually have what I call laxative day, where I take a full amount of milk of magnesia to get cleaned out enough (usually on Saturday so I can go to church on Sunday).

The diet that works the best for me is published on the web at an ibs site. It has 3 categories of foods: TABOO foods (no dairy, MINIMAL fat like butter/margarine/mayo/chocolate/nuts/seeds/peanut butter if at all, nothing but white meat chicken/albacore tuna or unbuttered broiled/baked seafood, no red meat/dark meat chicken, no caffeine/carbonated drinks/chewing gum, no regular tea but fennel tea is okay, and peppermint tea is okay if you dont' have GERD, no whole grain products of any kind); SAFE FOODS of primarily SOLUBLE fiber foods which hold water and creat more bulk like white bread, low fat white crackers, white rice, hot cream of rice cereal, white potatoes but no skin, cooked carrots/zucchini/parsnips/mushrooms/yellow squash/sweet potatoes/rutabagas/raw avocado (interestingly)/bananas/mangoes, Cheerios, flour or corn tortillas, Baked Lays potato or corn chips, soy milk, Apple Jacks, breadsticks, pretzels, applesauce and some other ones I cannot think of right now; and what I will term "INBETWEEN FOODS" which consist of primarily INSOLUBLE fiber foods that you only eat in measured amounts that are chopped up very well AFTER you first eat SOLUBLE FOODS at the same meal which I have already listed in this paragraph with the primarily INSOLUBLE foods or INBETWEEN foods including mostly other vegetables and fruits, like apples but always peeled, lettuces, cooked spinach, plus cooked cruciferous veggies like broccoli and cabbage, etc., cooked onions, garlic, etc. If you do not have GERD then you can have tomatoes and some citrus.

I make a stew that contains cooked rice, a can (or two) of white meat chicken, chicken broth, salt as needed, sliced carrots/zucchini/yellow squash/mushrooms/parsnips (which I had never had but they are delicious when cooked and have a sweet flavor). This does result in that mushy messy stool consistency with lots of stools per day (around 15 on average), whereas if you go with just the boiled peeled white potatoes, white bread, Baked Lays, cream of rice, white rice and leave off the cooked veggies, the stools will be formed in my case.

Lately, I have been cheating with some coffee with cream, a dab of ice cream, a few Cheetos, a few cashews, a few regular potato chips, etc. and paying the price, which is virtually no stool at all, and as of late, not even any gas since I think I have that colonic inertia.

I hope what I am telling you is of at least some help.

I wish you had insurance and could do the elective inverted colostomy because I myself am ready to push for an ostomy, not so much because I want to eat more, but because I have a dreadful time driving with a revulsion of public toilets even though I am a guy. I can stand up in a bathroom, but there are so many bathrooms where I just cannot bring myself to sit down, since I have no idea of how long I will end up in there plus you know how dirty some bathrooms can be. I carry baby wipes with me every where I go, and sometimes I have some Depends, if I am feeling nervous and having to go out of town to the doctor since I live in a small town.

I hope I have made some sense here. I hope that what I gave you on the diet at least provides you with some information that can possibly be of help.

I have to go for now, but will try and check back later tonight. Ugh, tomorrow is the dentist and Friday is the pain shot doctor. Then Saturday will be laxative day with no eating except for water, and Sunday will be church day.

I send you my blessings in all that you do, and hope that you have peace whenever you can and wherever you can. I am glad you have a supportive husband. I have a lot of fear in being alone and as I age and as my parents age since I live with them.

Talk to you later, C

C - you mentioned you need Depends, for added security, etc. I thought of a product I've used ever since I had my temp ostomy reversed, and don't laugh - men wear them too. I read this tip on a colon cancer survivor forum years ago - if you're embarrassed to shop for them, ask your mom. In the feminine product aisle, look for Stayfree Ultra Thin Overnight with wings pads. They are extremely long and the wings are sticky flaps that go under your underwear. I wear one for work, for travel, definitely on trips. I go thru about two bags a month, but I no longer need them for their intended purpose. What's great about them is they are very thin but highly absorbent and keep your underwear clean if you're running to use a bathroom and have a few drips along the way. Of course women can easily carry more in their purse to change. Not sure what you'd do about that but if you're interested in this product, they come in a small square packaged bag, 14 pads (there are larger bags but this small one is easy to find), it's black with a moon and stars on it (why, I have no idea!). These pads have been a God-send for me.

Marsky, wanted to get back with you.  I just need to unload a little bit, but I don't mean to burden you.  I am having some serious anxiety and fear and dread about going to see about the ostomy this coming Wednesday.  I've had 5 surgeries since November 2010, and am so tired of this.  I know that you know how that feels. 

I'm venting to you more than asking you for how to get through this.  I try to stay upbeat, but yesterday I had to cancel the dentist and today I had to cancel the epidural that was scheduled from literally being worried sick, despite my medications for such.  You have been so supportive in such a short time, and I feel safe telling you this.  I feel really bad about my elderly parents and their stress over this as well.  They are in their 80's and I am 57.  I only have one semi-supportive sibling.  The other siblings are off in another world in another state.  I'm not originally from this small town and so my friends are few.  Anyway, just posting.  Thanks for listening.