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TOTAL COLECTOMY PART 27

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Posted 11/9/2009 3:47 AM (GMT 0)
On a whole separate topic, isn't it just amazing how much poop we generate. Having an ileostomy, I have to say I see all a whole lot sooner than others. But all I had today was rice cereal, an egg and cheese croisant, and an egg nog. All is passing OK, but it's just amazing how much poop the human body generates. Couldn't even introduce that topic as conversation anywhere but here. :-) Rosemary
Posted 11/9/2009 3:58 AM (GMT 0)
oh great Tracy! so i guess this laxative is the same as miralax, ours called "normalax". i posted a question to a gastro dr's forum if he knows miralax and whether normalax is the same, but sounds like it's the same. i don't know how it looks like yet, i'll tell you if it looks the same when i buy it. my belly is big and swollen too lately and i agree, it's really getting uncomfortable. grrrr i took prune juice last night and it just didn't work!! i don't get it.. i only took it for the last couple days and already it stops working???? i'm so worried and scared of all of this. when i took it the first day it turned my stools to water and now it's not working. Jen, thanks. i'm glad you're feeling better and getting your appetite back, you need those pounds back on asap! i'm affraid i won't be able to help you with the butt cream, i'm using a cream called glysomed/also called glysolid, it works like a charm, but i'm not sure you have it in U.S.A. it's actually a hand cream, but i found it helps me the most.. so i go with it. Janie, glad the pizza went through well! :) maybe with my normalax i'll also be able to eat pizza.. YUM!! i really don't care either if i have to take something, as long as it keeps working, that's my only worry. well gotta go to work, later.
Posted 11/9/2009 4:31 AM (GMT 0)
Jen,

The best thing I've found for butt burn is calmoseptine. I get it at Walgreens; it's not a prescription, but they keep it behind the pharmacy area. It is wonderful!

Does anyone else make horrible noises when pooing? It's SO embarrassing. Sometimes it sounds like I'm blowing everything inside me out, but only a little comes out...guess it's all gas, but it is so loud. Any suggestions? Is it what I'm eating? I don't think so, because it happens so often no matter what I eat!

Hodaya, try the miralax. How much prune juice do you drink? I used to drink 5.5 oz can every day and it worked too well...very liquidy. Miralax makes things loose and lots of liquid but no butt burn. Just noise:)

Marisa,

That is great news about your mom. I hope she continues to do well. Glad you're pooping, too. Isn't pooping the greatest?
Vegas is great!! We try to go every year and have for years. We haven't been since June 08 so we're overdue. You will love it. I can give you a few tips of some good cheap shows! Do you know where you are staying? We have a timeshare here in Florida, so we usually trade for a place on the strip called Polo Towers, but we've stayed at the Orleans, MGM, Golden Nugget and a couple other places. You'll have a blast! I'm jealous:)

Janie
Posted 11/9/2009 4:52 AM (GMT 0)
I'm envious of those of you who have small intestine hooked to rectum instead of ileostomy bag as I can never be hooked up so I have what I have and just hope all keeps moving as it has (as in will be lucky if I have no gut scarring recurrence.)

However, the curiosity is just killing me, and I have to ask the question......with liquid poop from the small intestine and the rectum acting as a reservoir, when you get the urge to go and the poop being all liquidy, how much time do you have to get to a bathroom? Is it like you have to get to one immediately? or is it sort of like when I had my colon (which worked) and I'd get the urge, then I'd have some time to get to the bathroom?

This is the only place I can ask this. Thanks, Rosemary
Posted 11/9/2009 12:45 PM (GMT 0)
It's been 3 weeks since my surgery, but so far, you get the "urge" to go , but not uncontrollable. Haven't had any accidents. Hope this helps.
Posted 11/9/2009 12:51 PM (GMT 0)
Rosemary,
The first couple days were "wham" and then I'd go...over and over. I wore depends and I was scared that I would never be able to leave my house! Then it just settled down. Now that I'm on miralax, I do have to get to a bathroom fairly soon, but yesterday I was in a store and got the urge. I had time to walk to a bathroom, find it closed for cleaning and then walk to the back of the store to the other ladies room!
Also it's not always entirely liquidy. Before I started taking miralax, it was often softly formed when I could finally get it out; it still is a little, but much more liquidy now.

Janie
Posted 11/9/2009 5:01 PM (GMT 0)
Janie, when i take prune juice i take 1/4 litter, i'm sorry, i dont know how much it is in oz. anyway, that's a big whole glass of juice. if less than that, it won't work. i drank prune juice again just now right after my dinner, i hope it works this time. my rectum is acting more and more weird and seems like the passage through my anus is narrowing. and yeah, i get exactly the same bursting bms, but it happens only when i eat wheat, it bursts out with A LOT of noise, ha ha, but most is gass and just few grains of poo. i'll try the miralax (normalax in israel) and see what happens.. but kinda scared to start with a laxative.. maybe i should talk to my dr first? Rosemary, even if the stools is liquidy, i always have time to find the bathroom. my prob is just the opposite, i need to go right away but for me it's b/c i don't want to lose the momentum lol, cuz if so, then the bm will be smaller.. outlet disorders are complicated. Thumper, i remember talking to you.. how are you? hope surgery went well and you're o.k.
Posted 11/9/2009 5:27 PM (GMT 0)
Hi all,

Rosemary I am two weeks post-op, and though I get the urge to go to the bathroom I still have complete control. I have had complete control since day one. Of course being at home all the time I don't hold it, but I feel I could hold it long enough to get to a restroom if I were out somewhere.

Janie thanks for the advice on the butt burn cream. I think I will get my husband to take me to Walgreens this afternoon. My bm's also can be quite explosive which I find tremendously embarassing. Of course I run the fan at home to drown out any noise, but I am really worried about using a public restroom. I am very self conscious about things like that and embarass very easily. But oh well at least I can GO!

Marisa I am glad your mother is doing better. I hope she continues to improve.

Hodaya I am sorry you have to take some sort of laxative even after surgery. I worry about that happening to me but right now things are still good.

I did try spaghetti last night for supper. The doctor said trial and error well let me tell you spaghetti was definitaley an ERROR for me. I had the worst stomach cramps and felt really bad. So bad I just went to bed. I love spaghetti so I am sure I will revisit it in the future but for now it is on the NO list.

Jen
Posted 11/9/2009 5:46 PM (GMT 0)
You guys are so funny! All this talk about poop is hilarious. I am like Janie...I didn't talk to my doctor about this issue until 2006 and this was after my sacralcolopopexy surgery and when I told my doctor exactly in detail what my problem was...he looked at me like I had 2 heads and dismissed me as quick as he could to a gastro doc. HEEHEE It is funny now, but devastating then. Even the gastro doctor thought I was crazy when I told him I couldn't push the poop out.

Janie, I read that miralax can cause excess wind???? Maybe that is where all the extra gas is coming from. But if it works, then keep taking it. I know that senokot caused me to be more gassy than the miralax though.

Rosemary, I would think that you could fly. I never heard that you can't fly with a ileostomy. I don't have any reason to fly, but would want to be able to if I needed to????? How are you? I am still the same. Can't poop! HAHAHA I can't wait until Dec 28 and this doctor better not be mean to me or we are going to have some problems. I am tired of getting treated badly by these doctors. I am human just like they are.

I have thought about that doctor that was mean and I think he was offended that I didn't schedule my surgery, total colectomy, that very day. He was not happy that I questioned his opinion and that is when the rest of the visit went downhill. Ok, back to work for me. Have a good day everyone. T
Posted 11/9/2009 5:48 PM (GMT 0)
Jen,
Sorry for the advice about spaghetti:( I guess I'm lucky, the only thing I've eaten that has given me stomach cramps is fried oysters the first time. See, I'm not too smart, because I had them again! However, the second time was fine.

Hodaya,
I don't like taking anything to go either, but I think the thing with prune juice is that it irritates the lining of my small intestine and makes me go, but it's so strong and liquidy. Miralax still makes me go (except today I've hardly gone at all and I'm getting worried!) but it's not quite as much liquid and not nearly so hard on the rear end coming out. I don't get the butt burn with miralax.

Janie
Posted 11/9/2009 5:53 PM (GMT 0)
Jen, i can't eat spaghetti either, it bloats me real bad. i'm glad you're doing well though :) if you can eat small amounts throughout the day instead of big meals, it's better that way. if i eat the soft-liquid diet, then i don't need to take anything, but living on this diet ALWAYS is simply impossible.. well at least for me. maybe there are lots of ppl in the world who are very sick and can't eat even that, but i'm a young woman, working and active and i just CAN'T settle for this diet, i NEED real food, or i'll go nuts. yes this whole situation is too diappointing to me and i'm really depressed. i do need to make an appt to my dr. but that doesn't mean you'll be the same. mostly i feel my prob is in the pelvic floor. not sure what it is, but there're definitely some issues there that need to be taken care of. we'll see after i can have some tests run.
Posted 11/9/2009 6:00 PM (GMT 0)
Janie, yes prune juice gives me major butt burn too, i'd be glad to have normalax instead and not have the butt burn.. i'm so scared of fissures!
Posted 11/9/2009 6:24 PM (GMT 0)
Hi all,

Thanks for satisfying my curiosity on how long you have to get to the bathroom with small intestine hooked to rectum. Glad you have some time. And always, no matter what the issue, aren't rest rooms often "closed for cleaning" :-)....... Hodaya, something you said made me start to think of how I was with my colon intact that did work and according to my reviewers had no redundant parts. I also had the issue of when I had to go, I had to find a bathroom right away and go because if I delayed, the urge would pass and I would then pass only a small amount. THEN I had to go for another walk around the neighborhood, get the urge, and while I still had it, time it just right to hit the toilet before the urge passed. It's like if my butt hit the toilet seat at exactly the right time in the "urge process" a ton of poop would come out all at once.

I bet I had some outlet issue that was not diagnosed and was not actually surgical. I did not have anismus as my anorectal angle widened normally for defecation and angled correctly for continence. Hodaya, if you find out specifically what your outlet issue is let me know, mine may have been identical. Our symptoms (mine in the past tense) seem soooo similar.

My atty said even if I win my case, it just comes in the form of a check, no actual answers are arrived at. In addition to settlement, I want to know what the heck I did have in the first place, for closure purposes.

Hi Tracy, I'm doing Ok, the small airplane ride was great. Am THINKING about flying commercially again. We'll see. My current doc says no reason not to and he is right on in everything so far. So likely it would be great. Wish your appointment with the good doc was sooner, but Dec. 28 will come. Gotta get out another nice warm day here in Massachusetts. Rosemary P.S. Yes we are a riot with poop as our topic, but nobody else would get all this :-) We are the "experts." :-)
Posted 11/9/2009 8:09 PM (GMT 0)
Hi Ladies! Sometimes we sound so "un" lady like!! LOL all our poo talk.. it would be really funny if for the fact that it is not funny at all to us!

Tracy, have you seen the Dec doctor before, or is he a brand new doctor? I'm anxious for you to hear what he says. I do think some doctors get offended when we question them, and don't book surgery when they think that we should! I had the same thing happen with my reg. gyn.. she wanted to do a hysterectomy take my ovaries, and then do another major surgery to repair my prolapses. I questioned her about why she wanted to remove my ovaries and the method of prolapse repairs.. she did get defensive.. then her office kept calling to schedule my surgery, and when I said I was going to seek a 2nd opinion with a pelvic floor specialist.. they dismissed me from the practice!

Jen, do you think it's the sauce.. or the pasta? I bought some pasta for post op, that I plan to eat with just butter (buttered noodles). I was thinking that was good and bland.

Rosemary, it is hard to find out answers. I always wondered why I torn so badly when I gave birth (I felt it was the way the doctor cut me) but, I'll never know and all I have are the awful memories.

Hodaya, I do think the MiraLax is safe for you to try. All three of my doctors said it was the best. My GI doctor said I could double the dose and be safe.. which I do often.

So, I get my pre-op letter (again) and much to my surprise - it said "NO PRE-OP APPOINTMENT NEEDED" and went on to say the hospital would call and pre-register me by phone. That just didn't sound right.. having major surgery and no pre-op's..??! Before my other surgery was canceled, I had a pre-op, so I decided to call and just make sure.. lucky thing I did! They made an error, and now my pre-op is next week. They said I'm the first surgery of the day, and scheduled for 7:30 AM.
Posted 11/9/2009 8:26 PM (GMT 0)
Hi all.....

Checking in. Sorry I have not been on. Still feeling down and out, but improving. I have been doing ok with the MOM, but I am not hesitant to try the miralax, it just made me so sick before surgery. I had to take 5 times the normal dose. I start biofeedback on the 19th and see the counselor in the 11th. The meds seem to be working, but I still feel the thoughts in the back of my head about having another ileostomy. I see my surgeon again in three months so we will see how these go. He did give me a full 12 weeks off due to the mental recouperation. Still holding at 100....so thats good.

Janie, I am so glad the miralax is helping you.......hope it continues!!!!

Rosemary- Thinking of you......thinking of everyone......

Hodaya- I hope you are doing well....miss you love you.

Jen- Nice talking with you today....I really think you should consider ordering the benecalorie. Your body will heal faster with nourishment.

Marisa, Amey, Christy, etc all thinking of you.

Lizzie

Posted 11/9/2009 8:46 PM (GMT 0)
Rosemary, i'll sure let you know all about my tests results when i have them, but that would take some time till i can have tests done, at least 3 more mons :(  anyway..... lol aren't we the best team of experts..?? Jenise, OMG, such a good thing you called to make sure about the pre op! well i'm glad it's all settled now. you know, sometimes when the desperation is so overwhelming, all one has left to do is just laugh.... i did cry a lot lately and still do, cuz i can't help not to feel so disappointed, so sometimes i feel i must break this intense depression by laughing about the whole thing.. but it's sad, isn't it  Lizzie, thanks for checking in and updating us. is the biofeedback going to be lots of sessions again? i'm so scared that once i go to my dr and tell him about all of my issues, he'll send me to biofeedback again... ugh, i SO hate it! i hope you keep getting better. love you too so much!
Posted 11/9/2009 9:14 PM (GMT 0)
Hi Hodaya,

The pelvic floor tests I was not given prior to surgery were: anorectal manometry, pudental nerve terminal latency test, and surface electrode EMG studies. Too bad you have to wait so long for your tests, but that seems to be the theme. Good luck in the meantime, Rosemary
Posted 11/9/2009 9:30 PM (GMT 0)
Jenise I think it was the sauce that made me sick. When I started havng bowel movements after eating the spaghetti the poo was tinted red and what looked like undigested veggies that were in the sauce I guess. Sorry so graphic. So I think the noodles will be just fine. Plus everyone reacts differently. You may be able to handle it just fine. Today at lunch I played it safe. Two thin slices of Boars Head Maple Glazed Turkey(deli meat) and some cheddar mashed potatoes. I felt fine after that meal and just ate a few mini Nilla wafers.

I'm glad you called about pre-op. I had 4 hours of pre-op. I had a full physical at my surgeon's office, and then I went to the hospital to have blood work and fill out a ton of paperwork and talk to the anestheologist(sp)

Tracy if a doctor gets offended because you question them or tell them you are getting a second opinion then they are not the doctor for you. When my surgeon told me that I would greatly benefit from surgery I listened to everything he had to say and then told him that I wanted a second opinion before I go ahead with surgery. He welcomed the second opinion and even helped me fill out the paperwork to go to UNC Chapel Hill Hospital to meet with the head of the GI and Motility Clinic. He never once treated me indifferently for doing that. I also felt comfortable that he wasn't jumping to surgery because he told me that he only did one or two total colectomies a year for colonic inertia. He did them all the time for Chrons and Ulcerative Colitis. He said not many people meet all his requirements for colonic inertia. Hopefully everything will go well with your December appointment.

Lizzie it was nice talking to you today also. Keep your head up, and I hope things get better for you soon.

Hope everyone is well.
Jen
Posted 11/10/2009 12:55 AM (GMT 0)
I only have a moment and that is not enough time to read all of the previous posts...so, I just thought I would chime in and let you all know I am thinking of you...when I have more time I will catch up on my reading.

For now, just know that Rosemary, Jen, Janie, Hodaya, Lizzy, Jenise, Tracey, Marisa, Christy, and anyone I missed are in my thoughts tonight. I hope you all are doing great!!!

Warm regards,
Amey
Posted 11/10/2009 1:25 AM (GMT 0)
Hi,

I wish I had happened upon this web site back in 2006 when I had my initial issue of incomplete rectal emptying. I went to the IBS strand of the forum at that time. It never occurred to me to go to the ostomy strand. You all have all the knowledge of all the tests. AND had I known that Sorbitol was something to take to "go" I would likely have had great success with that. I know that sucralose sure helped me go and that was WITH my colon though with me that worked OK. Were you all on this board back in 2006?

I am surprised all this testing and drug information is not on the IBS strand, or printed on a handout in a colorectal surgeon's or GI docs office. We could all go into business marketing all our knowledge for the general public, a second career? :-) Rosemary
Posted 11/10/2009 3:44 AM (GMT 0)
thanks so much Rosemary! yes, 3 mons seems like a looong time for me now, but i can't have any tests till it's at least 6 mons from my colectomy. but i'm thinking of seeing my dr sooner. as to your question.. i joined this site on Nov. 2008. you can also see everyone's date of joining this site under their screen name. you're right, this site is truly amazing and the knowledge i've gained here helped me TREMEDOUSLY! there's nothing better than the knowledge and advice of the ppl who gone through this themselves! no dr would/can give you all of this information!
Posted 11/10/2009 12:50 PM (GMT 0)
Hodaya,

You are right, only the people going through this really get it. It never occurred to me to look at the join dates under peoples screen names. Amey was the only one on in 2006. She joined in July, the very month I had my original unneeded surgery. Everyone else is more recent. I wonder if there had been others on here before. She would have known all or most of the answers to my questions, if I'd known to ask them. My whole issue surrounding that 2006 surgery was a miss in time. Did not know to question the defecogram because head surgeon at Brigham and Women's GYN hospital showed me the scan and said "See that's your sigmoid colon closing off your rectum." Never occurred to me that it was only a loop of small intestine and that I'd already expelled the contrast, therefore even that was not the cause of my problem. Even he suggested no other tests. I just thought I was seeing on the scan what he TOLD me I was seeing. Unbelieveable. Oh, well, can't go back in time. Hence the suit. But wow, sort of spins your head around doesn't it? Rosemary
Posted 11/10/2009 4:40 PM (GMT 0)
Well all.....

I just wanted you to know I see my counselor for the first time today.....we will see how this goes. I am nervous, yet excited.

Rosemary- I wish I would have been around to help you more....I think I was more in 07. I pray for you and I know what its like to have a bag abd I bless you for being so strong. I hope that day does not come back for me, but nothing is 100%.

Hodaya- Your BM's sound just like mine....they are wither liquid or gas with hardly any particles. I feel there is something going on with my rectum and I guess I will find out at biofeedback next week....oh the dread of going again. This is my third attempt. What if my anismus is coming back???

Amey- Always thinking if you....

Tracy- You are so constantly on my mind becuas elike be before all of this you live in such misery. December seems so far away. I wish you could move everything sooner, but I understand your reasons.

Janie- I am going to have to try Miralax, but MOM does not give me butt burn and it cleans me out so I am kinda scared to change. I do not have to take much and go about 4-5 times with complete control.

I just ordered a stop smoking aid to see if this helos me quit....I have to....the last thing I need is cancer and I am ready for new beginnings.

Jenise and Jen- Thing of you both and praying for you.

I love this family....

Lizzie

Posted 11/10/2009 4:47 PM (GMT 0)
dear Rosemary! every time i read about your story i get so so sad for you.. they did you so wrong, you couldn't possibly know anything at that time and it's scary how our lives are in those drs hands sometimes. i try to keep my faith and know that evetually it's all in G-D's hands and at the end it will all be for the better. my faith is helping me through my difficult times. hope it can help you too. you're in my prayers. G-D bless!!
Posted 11/10/2009 5:02 PM (GMT 0)
Lizzie, love your beautiful soul!! don't think bad things, honey.. the anismus isn't back and never will be!! if the MOM helps you, then stick with it. i have no idea what to choose my self. i'm all of a sudden again so scared to choose anything, but i must try something, cause i can't go on like this. OMG i sooooooooo wish i could stop smoking too........ after my surgery i didn't smoke for about 6 weeks and i can tell you, i felt woderful after not smoking for 6 weeks!!!! i NEVER stoped for such long time. i admire you if you can!
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