5 wks after TC, still going all the time and butt is so sore!

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Janiepain
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Date Joined Jan 2007
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   Posted 4/22/2009 7:19 PM (GMT -7)   
It's been 5 weeks today since I had a total colectomy for colon inertia.  I also have pelvic floor dysfunction.  I am still going to the bathroom over 20 times a day, and my rear end is so sore I can hardly sit.   I have lomotil and if I don't take it, I go all day long..very loose stools..and if I take 2 or 3 lomotil a day(at meals) , it slows down my movements to only 4 or 5 during the day, but then in the evening I feel terrible....like I have to go and can't.  It feels like the stool is just sitting in my rectum.  I sometimes go to the bathroom 20 times after dinner to try to go; sometimes a little comes out, but usually it doesn't really start until the middle of the night and then I'm up all night.
It seems like I'm either going all day if I don't take lomotil and have to stay close to the bathroom, or if I do take it, I'll have a good day, but a terrible evening and night  Any suggestions??  Other than that, I feel fine; no pains, etc.  Except my poor raw bottom...and I do have good cream, but still feel raw.  I'll be going back to work in another 5 weeks or so, and I really need to get this under control.
 
Janie

peggy113
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Date Joined Aug 2007
Total Posts : 1998
   Posted 4/22/2009 8:33 PM (GMT -7)   
Janie,

It seems that the lomotil is doing it's job... you are taking it at meals. Why not take 1 before bedtime and then you might only have to take 1 or 2 with your meals... kinda keeping it in your system to keep things moving but just slow it down around the clock. I don't have CI, I had CD. But I've been following the CI stuff, about which I'm not very knowledgeable. Do you think taking one at night would help the beginning of your day?
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 4/23/2009 12:14 AM (GMT -7)   
yeah, maybe Peggy is right, maybe you should try taking it in different times..?
anyway, i think it's time for your dr to check the anastamosis site if there's narrowing and such. also do a repeated defecography - VERY important. just keep telling him you feel a significant obstruction within the rectum and only watery stools can pass - that's just about the most justified reason there is for doing these tests.
 
oh, and i've just remembered, you said you're seeing him the end of this mons, right? so soon enough i hope you can have some answers.
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction

Post Edited (2b ColonFree) : 4/23/2009 1:17:31 AM (GMT-6)


Janiepain
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Date Joined Jan 2007
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   Posted 4/23/2009 4:49 AM (GMT -7)   

Thanks for your suggestions! 

Peggy, I would take one at night, and sometimes I do if I don't take them during the day....I've been trying every combination!  When I said 2 or 3, I meant one at each meal, not 2 or 3 at a time....the most I've taken in one day is 3 total.  The problem is that if I take them during the day, I don't go much at all and I feell like I need to go.  Then I finally go alot at night.  Does that make sense?  It just seems like taking the lomotil slows things down, but it still needs to come out, doesn't it?  When I go, it's such small amounts at a time, so that's why I go so many times.  I've even cut the tablets in two, but they're so small that's difficult!

Hodaya,

I see my surgeon next Tuesday.  I will definitely ask him about the tests.  If I take fiber (which makes going much more uncomfortable) I do have some formed stools, but only very tiny, or very skinny (sorry to be so graphic).  I think part of the problem is that I just don't know what to expect anything to look like!!  All I know is that I'm jealous of those who go 8-10 times  a day.  I wonder if they go alot more each time?  Running all day long gets pretty weary...not to mention I'm tied to the house!  Hope you're feeling better, too.  No news from your Dr. yet??

Janie

 


2b ColonFree
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Date Joined Nov 2008
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   Posted 4/23/2009 12:49 PM (GMT -7)   
i'm so sorry for the hard time you're having, Janie. i think at this stage your dr can check the anastamosis site, though i'm not sure how they do that, wether with a scope or ct scan..? i don't know. anyway about the defecography i hope you can do that at this stage of recovering. i think you should really insist on these two tests.

today i feel o.k but most of the time i'm in a LOT of pain. it's always the same pain but with time it's getting more and more intensive and more sharp.

well, my dr hasn't called me yet, and you know, i've said it that i'm gonna call him myself and tell him that i don't want to wait anymore and that i want to go for surgery already and that i really think i'm ready for this surgery and i don't think i need the psych guy etc, etc,

i have only his number at his desk in the hosp where i see him and he's there only on sundays and wednesdays till around 12:00 am, so each sunday and wednesday i tell my self, that's it, now i'm gonna call him, but you know what..??? when i'm trying to dial to him i just freez to death and i just CAN'T do it... :o( !!!!!! i dont know what the heck is wrong with me..???? and that's how it goes every sunday and every wednesday.

i don't know.. i'm kinda freaked out and i cant shake it off of me and it's driving me crazy. what's wrong with me....?

my guess is that they're not in a hury, they know i'm having anxiaty about the surgery, but i know that if they see i'm in a hury for surgery, that i'm confident and determind, they would sure do something, but i'm so frozen to death to tell them that..
i think the ball is in my hands now. i just don't know how to handle this silly situation. i'm simply such a silly girl..(HELP sad )
 
anyway, i hope your dr's visit provides you with answers and a plan as for what to do.

you're always in my prayers, hun!!


Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction

Post Edited (2b ColonFree) : 4/23/2009 2:32:03 PM (GMT-6)


Janiepain
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Date Joined Jan 2007
Total Posts : 662
   Posted 4/23/2009 3:32 PM (GMT -7)   
Hodaya,
You need to give your doctor a call! It sounds like maybe he forgot about you. One thing I've learned over the years is that you need to take charge of your own health! I can imagine that you are nervous about calling, but just remember that the doctors have so many patients to think about and you're just a number to them. I know that doesn't sound very nice, but I do think that's true alot of the time. YOU know how you feel, and YOU'RE the one suffering. Don't worry about what they think of you....just tell them you need help! So Sunday, you be sure to call, and then let us know what they say, ok??

Today I didn't have breakfast, and took 1 lomotil at noon with lunch. My husband and I went out for lunch for the first time since surgery....only about 5 minutes from our house and we sat near the bathroom just in case!! Anyway, I had a turkey sandwich and about 5 french fries, and I made it home and have only gone to the bathroom twice....it's been 4.5 hours, so we'll see how I do tonight. I'm not really hungry yet, but I'm not taking another pill today. So far so good....yesterday I had a horrible day, but this morning I remembered that before dinner yesterday I had my first glass (2) of wine since surgery, and I bet that is why I was running to the bathroom all night! I guess alcohol is a big no no for awhile.

Be brave girlfriend....you can do it. Give that doctor a call!!!

Hugs, Janie

2b ColonFree
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Date Joined Nov 2008
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   Posted 4/24/2009 2:23 AM (GMT -7)   
i lllllllllove you Janie!! thanks. yeah well, the fact that he has forgotten about me is so obvious, but that's o.k, that's why i'm saying the ball is in my hands now and i'm the one to make sure things will happen already.

it's just that all i hear is that things are not working out for you, Lizzie, Karen ended up with a bag (temporary, i know), but inspite of that, she's saying she's feeling so much better and is happy she had the surgery, so that's why i also think that even if things dont work for me and i'll have to have a bag for life it'll be much better than the way i am now.

i guess that evetually i'm gonna have to face it, cause i cant avoid the inevitale forever.

gosh i hope you get it all figured out, cause sounds like you're really having a hard time :o( and i'm so sorry for that, and i'm hoping for a much better quality of life for you. you're in my prayers every day!!


Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction

Post Edited (2b ColonFree) : 4/24/2009 3:26:41 AM (GMT-6)


Marsky
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Date Joined Jul 2007
Total Posts : 1956
   Posted 4/24/2009 4:35 AM (GMT -7)   
I agree, we do need to take charge of our own health. Become our own advocates. I feel like I fell thru the cracks so definitely speak up to your doctor Janie. My original surgeon saw me thru my resection and takedown but then moved to another state, 1000 miles away so his partner took over my care. This is when he said he would have taken a different approach to my rectal cancer (1 inch tumor, barely inside, I am now living without a sigmoid and having multiple bm's everyday). He would have given me a J-pouch and a temp illeostomy. At that point I wanted absolutely no part of major surgery - lol. No thank you I said. He agreed, I had been thru the wringer. Then over time he thought an excellent female top notch colorectal surgeon in my city - Cincinnati - would be better for my long term care. I see her now. I wish she had been my original surgeon! She said she would have taken yet another approach to my cancer. At this point, I am still avoiding any major surgery, we no longer have good med insurance (certainly not the type and low copays/out of pocket expenses we had in 1999). So surgery is out for now. But she claims I'd have my life back if I agreed to an inverted colostomy, one I would irrigate once a day. For now I am exisiting as is - multiple bms per day. Not watery though and not as frequently as you go. But in the beginning, post takedown, June 1999, I was having 3 bm's per meal. The minute I began chewing and swallowing food, I had to go. It was just awful. I was literally confined to my home and bathroom. I honestly never thought I'd be able to get in a car again or leave this house! We bought a treadmill so I could stop it and run to the bathroom because long walks away from home were out too.

Long story short, I went on a low residue diet and never looked back. I eat very-very plain foods now. Have been for almost 10 years.

Has anyone suggested a low residue diet to you? It saved me from being home bound.

I do wish you well. In the end if you get a permanent colostomy, it is certainly not the end of the world. And for most, the beginning of the rest of your life. When I had a temp ostomy, I could eat a lot more foods than I can now!

Mary
Marsky/Mary's story.....
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening

All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!


2much2bear
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Date Joined Mar 2008
Total Posts : 624
   Posted 4/24/2009 7:26 AM (GMT -7)   

Janie sorry to hear about the problems with being tied to the house.  Has it changed since surgery as i remember you said you were going out and about etc.?

I think Hodaya has a point, but i think alchohol does cause looseness - when i drink straight juice it all becomes watery.  Also i think i will be going just a little a lot as i only empty my bag about 5 or 6 times a day and it is usually only half full plus air. 

I suppose i am 'lucky' in as much as i can roughly see what causes it to become watery.  Fish does, yet spinich takes ages to come through.  I think my transit is roughly 3 hours.  itsi s weird trying to get used to it.  I am also a bit worried about having it reversed but whatever happens happens.

You have probably done it, but have you increased your low residue carbs?  When i eat bread, rice, spaghetti and haribo sweets it makes it a lot thicker and harder to push out of the bag!  I suppose you have tried increasing carbs though.  its early days for us both i know.

Hodaya go for it - i would much rather have this bag than what i was going through before.  I do wish you well my dear.


Karen 47 yrs
1997: Diagnosed IBS
2003: Pelvic floor repair surgery (rectocele/cystocele)
2006: STARR surgery for mucosal prolapse/Obstruction
2006: Diagnosed with slow transit constipation
2007: Sigmoid resection because of partial volvulus resulting in immediate colonic inertia
 
15 JANUARY 2009: scheduled for T/C
12 FEBRUARY 2009 - Re-scheduled T/C- (postponed as the Professor is away)
10 MARCH 2009 - T/C HORRAY FOR A CANCELLATION!
Loop Ileostomy - Due for reversal around June 2009
 


Janiepain
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Date Joined Jan 2007
Total Posts : 662
   Posted 4/24/2009 12:21 PM (GMT -7)   

Hi Mary and Karen and Hodaya,

Thanks for responding.  Yes, I still go out of the house, but only in the mornings before I eat.   I just got back from having my hair colored, and it's 2:30.  I didn't eat before I went out, so I got home and had a turkey sandwich, which is still there!!   I took 1/2 lomotil at 9:30 this morning, hoping it would keep me from having to go, but hopefully won't stay with me all evening.

OK--so yesterday I didn't eat breakfast, and I took a lomotil at 1:00.  I went out to lunch for the first time since surgery (only 5 minutes from my house) and when we got home, I went once just a little.  I only ate a little rice for dinner, because I wasn't very hungry, and around 7:00, I went about 3 times over the next hour...very little.  Then I felt awful--like I needed to go and it was stuck in my rectum.  I probably ran to the bathroom 8 times from 8-midnight,and a little came out each time.  Then at 1:00am, 3:00 am and 5:00am, I had loose stools again, and quite a bit each time.  It seems the lomotil just puts off the inevitable!  That's why I only took 1/2 of one today, and took it early this morning.  We'll see how tonight goes!

I am eating lots of rice, potatoes, white bread and cream of wheat works well.  I seem to be able to tolerate turkey sandwiches, so I usually have that for lunch. I'm trying to do the low residue as much as I can.  Like with the wine, if I cheat, I can really tell!

Mary, I'm so sorry you didn't have your current Dr. 10 years ago.  As much as I hate surgery, if things change and you get better medical coverage, maybe the new surgery is still a possibility?  Do you, or have you ever, taken any medication to slow things down?  I really dread thinking this low residue diet might be my life...going out to dinner was always a big thing for my husband and me, and this has really cramped our style a little.  I knew to expect this for several months, maybe even a year, but I will be really sad to think my old lifestyle is really gone forever.

Karen,

Yep, alcohol definitely causes looseness!!!!  That's good to remember if we ever get stopped up, though.

When are you having your reversal?  I hope you don't have any problems afterwards.   I'm not really having any major problems, just major inconveniences, that's all.   I told myself I wouldn't freak out about anything like running to the bathroom, etc. until it had been 6 months and I wasn't any better, but when you're stuck home most of the time, 5 weeks can seem like 6 months!

Hodaya,

Even though I'm having some issues, don't let that scare you.  I'm not having any big problems, surgery went well and I have recovered amazingly well.  The poop thing will work itself out, I'm sure.  THIS is still so much better than being constipated all the time.  So yes, call your doctor and get started.  You can't live like you are forever.  I'm hoping I won't need a bag ever, and I haven't had one to see how difficult it would be, but honestly, constipation was the worst thing I can imagine.  A bag might not be great, but I'm willing to bet it would be better than the way most of us were before!

Thank you all for your suggestions...hope everyone is having a good day!

Janie

 

 


Marsky
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Date Joined Jul 2007
Total Posts : 1956
   Posted 4/24/2009 6:45 PM (GMT -7)   
Janie - I never was a big fan of spicy foods or trying new things. I'm a plain foods kind of person anyway. So I don't feel like I'm missing out much. I have gone out to dinner and usually search the menu for the plainest entree I can find. Sometimes I order an assortment of choices from the sides section - a baked potato and small salad perhaps, or a fresh veggie medley and cottage cheese. There is one restaurant we used to enjoy that offers very fresh and eclectic dishes. Again, it's risky if I eat there but I order light items. One of the worst things I can order is the baby greens salads with nuts and seeds, along with cranberries. Omgosh, that does me in! But again, if I look carefully at a menu I can find something to eat. If you like to continually try new foods, then it's going to be hard to adjust. I would try a very plain diet for now and later try introducing more tempting foods one at a time. One thing I used faithfully for about 2 years was a food diary. I recorded every single thing I ate and drank each day (even if I ate 5 M & M's, that is important info if you're keeping track of what works for you and what is out right now). Also meds I took that day and if other things came into play (if you had a cold or were unusually stressed out that given day). After a while you'll see a pattern begin to form and be able to pinpoint foods that agree with your GI tract. Stick to those foods - for now.

You asked if I took any meds to slow things down. Well my doctor said early on - take Immodium and enjoy life. That was some of the worst advice I had been given! Here I was eating foods that I had no business eating and then popping Immodium. Not a good idea. I'm much more of the camp now that is preventative is better. I'd rather begin with eating what works well for my gut and not having to try and turn around an indulgence I then paid for, for sometimes days on end. Now if I stray from my diet, I only pay for this "fun" for about half a day. In the past I would be messed for 3 or more days!

The doctor I have now swears most of my troubles stem from the fact that internally I have nowhere for the stool to collect, back up and then be relieved several times a day. It just keeps coming. My original surgeon removed 90% of my sigmoid (the colon reservoir). She once drew me a diagram of what I look like now and a chart of what a normal colon should look like. I am very narrow at the bottom before it empties. Well, that day I could barely get to my car. I sobbed and sobbed. For my lost Sigmoid. Gone forever. Never to grow back. She did say I could have re-trained this narrowed new "sigmoid" or new reservoir. I tried that approach by having a very large breakfast, taking a suppository and drinking Metamucil. Waiting for this huge amount of food/meds/etc. to push my stool thru. Well, I had D for 5 hours. That didn't work either. She was hoping this onslaught of foods/fiber would stretch my colon and it would become my new reservoir. No, didn't work. I was miserable.

I find that what works best for me is to eat small amounts at each meal (3 a day but light ones, I no longer have very large meals, ever). And follow the low residue diet. In between I have half a banana, or a hard boiled egg, or a handful of pretzels. I also try not to eat after dinner, giving my GI tract 12 hours without food. Water is okay but no solids. This slows down my bm's too. I also remembering sleeping on my back during your stage. I would use the bathroom one more time, climb into bed, get into that position and not move. I tried to go to sleep as soon as possible. If I didn't lie on my side or stomach, this position actually stopped the sensation of having a bm. I in a sense created my own reservoir, by lying flat on my rear end. LOL! I know I would roll over sometime during the night because sure enough I'd wake up for yet another bm. But try sleeping on your back too.

In time maybe all of this will slow down for you.

I'm coming up on my 10 year mark next Wed. Woohoo. Somedays I want to shout out to the world - I beat cancer! Then other days I realize, wow I've been living this way for 10 years now....1/5th of my life! Never did I think my world would revolve around using a bathroom this much! I could tell you where every bathroom in my community is! If we go on vacation, my family tells me I am quite adept at finding off the beaten path bathrooms at various hotels and lodges. True, I am quite good at that. You have to be! Some people who survive terrible fires or tragedies always know where the exits are located. I always know where the bathrooms are located!
Marsky/Mary's story.....
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening

All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!


Marsky
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Date Joined Jul 2007
Total Posts : 1956
   Posted 4/24/2009 7:28 PM (GMT -7)   
Janie - almost forgot to add, when I kept my food diary, I had a running list of items I could never eat or drink again. You mentioned alcohol. I had 2 glasses of micro dark beer at an outdoor Halloween party about 8 years ago. It was a great outdoor event, bonfire and all. But boy oh boy did I pay for that beer the very next morning. I joke now that it worked better than the bowel preps I do for colonoscopies! Now I just stick to light beer and usually 1 or 2 at the very most. And that's on rare occasion. I avoid alcohol if I know I have an important event the next day. You will live and learn with all of this. Trust me, you'll figure out what you can and can't have.
Marsky/Mary's story.....
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening

All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!


Janiepain
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Date Joined Jan 2007
Total Posts : 662
   Posted 4/24/2009 8:25 PM (GMT -7)   
Mary,
Thanks so much! After reading all you've been through, I feel terrible to be complaining. I knew going into this my life would change, but this was my decision. I had colon inertia and had spent my entire life (I'm 53) being constipated and I wanted to finally be able to go....boy did I get my wish. Like I said, I made this decision. You didn't have a choice!

I have kept a food diary since I got out of the hospital. My first week home I was so careful about what I ate, and I was still going 20+ times a day. When I saw my doctor the next week, he said that was way too often to be going, and he gave me the lomotil to slow things down. I'm trying to just take 1/2 to 1 pill a day to help slow things a little, but not stop things. It's just a learning game, I guess. I have very few things that I consider "safe"...cream of wheat seems to be best. I read that peanut butter was so good, but I've tried it three different times and every time I've had numerous bms for hours...so I guess peanut butter is not good for me.

My doctor took my entire large intestine and connected my small intestine to my rectum. I asked him about leaving a few inches and he said his experience was that for someone like me, leaving even a couple inches could still keep me from going. I hope he's right! I've read so much about this, and everything I've read says the same thing, but now I'm wishing I had few inches for the food to stay in for just a little while. Right now, if I don't take any lomotil, before I finish a meal, I'm headed to the bathroom....and then back again about 6 times for the next couple hours. I read how some people have this surgery and go about 6 times a day...I'd be thrilled with 10 times at this point!

One thing I wonder, when you stop going quite so many times, do you go more each time? I think the reason I go so often is because I go just a little each time. If I could just go a little more each time, it would be nice.

Unfortunately for me, I love food!! My family has always joked that I must have great metabolism, because I loved to eat so much and never gained much weight. I've lost 12 pounds since surgery, but really don't want to lose any more. Have you lost alot of weight? I know you're right about not eating large meals, I just can't do it either. I stop eating because I know what will happen, but I'm usually still hungry. I guess I'll get used to that. I do eat pretzels quite a bit, and they don't give me much problem...thank goodnes. I've always been a snacker, and if I can't have chips at least I can have my pretzels. What about sweets? Can you eat them, or do you care? I was a sweet freak, and I've cheated and had low-fat ice cream a few times. I've also had a couple pieces of chocolate, and neither of those things bothered me as much as I thought they would. The wine definitely did me in, though. I agree.....much better than the preps I've used in the past!

Thank you again for all your help. I think I'll go to bed now and try the back trick!! I'll let you know how it works!
Janie

Janiepain
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Date Joined Jan 2007
Total Posts : 662
   Posted 4/25/2009 5:38 AM (GMT -7)   
Mary,
I forgot to add Congratulations on 10 years cancer free!! Way to go! And you're right, the bottom line is you're alive and healthy. Pooping alot is just an inconvenience! BUT I do have a question, why do you take Colace everyday?
Janie

Marsky
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Date Joined Jul 2007
Total Posts : 1956
   Posted 4/25/2009 7:50 AM (GMT -7)   
Janie - only too glad to answer another question. Well about 5 years into this stage, post-cancer, post-colon resection, I went in for a GYN check. I had an ovary cyst that turned out to be benign (great news) but while performing this simple laparoscopy surgery my GYN doc said I had scar tissue by my left ovary, where the cyst was located and I should be on a stool softener. In case I ever had a blockage from where my old temporary colostomy was located (near this left ovary). I laughed and said - oh no problem there! I go ALL the time. In fact compared to what I've read here and on the IBS board I have never been anywhere near a blockage stage. So that was good news to share with him. He then explained that if I were to be on a daily low dose maintenance stool softener, it would keep my stool more consistent and soft. Not rock hard or D. I've always wanted that in between stage - formed stool. That's been my goal all this time. to easily run in the bathroom, go for that multiple time that given day and be done - no mess, done and back to whatever I had been doing at the time (yardwork, chores, errands, and now working part time). So long story short, he gave me something to think about. At my my next colon check I mentioned his advice to my colon doc. She pondered his advice for a few minutes and agreed, that a pediatric dose might be what would help me the most. So it sounds CRAZY that I take this! But my GYN doc was right. Now I will tell you when I first purchased Colace in 50 mg I had to take it every 36 hours. 24 was too much and 48 too little. So after a while I got into a pattern of taking it near bedtime and now I can take it every 24 hours. It does keep my stool more consistent but not D. For a while I tried generic but it contained senna in it (my advice is to never take anything with senna, it's an herbal type product that irritates the lining of the colon and induces D!). So now I just order Colace 50 mg from the pharmacy, it is OTC but it's a product they do not keep on the shelf. They stock 100 mg but they're capsules, you can't cut them in half.

Personally, my situation works best with several key things in place (I feel like they're puzzle pieces, if one is missing, I'm a mess...LOL): low residue diet, smaller meals or skipping meals sometimes, keeping my stress as low as possible, and Colace 50 mg. All of these combined keep my stool as formed as possible. I'm also back to eating 1 full cup of Stonyfield Vanilla flavored yogurt a day, half in the am and half right after dinner. I'm also trying acidopholis pills again (1 a day, found in the organic chilled section near organic yogurt). Recently I think I got into a pattern of having bad bacteria build up in my colon and I needed to restore the good (with acidopholis).

However I think you are in the stage I was at very early on. You are trying to thicken your stool and keep it formed, right? I would go on the low residue diet, 100% of the time. Immodium is okay to take but it never really helped me much.

I hope I haven't complicated things by being so wordy but that's where I am almost 10 years later. Thanks for the congrats! I should celebrate next Wed. Trouble is our family's budget is so incredibly tight. So tight that I am now seeking a full time job (wish me luck with endeavor, I will have to skip lunch every work day).

Oh one more thing.....yes I lost weight. I was a size 12 pre-cancer, bordering on 14. I went from a 12 to a 4. In about 4 weeks! I was very, very thin. I hadn't been a size 4 since prior to having had my 2 daughters. So I knew a 4 wasn't a realistic size to settle on. I bought a few 6's but now I'm an 8. I've remained an 8 for about 6 years now. I do think since food doesn't stay in my system for long, I am able to keep my weight down. But of course there are those well meaning friends and family who want to fatten me up, usually with very large meals. I can no longer eat that way! You might as well have me take meals on the toilet then......sometimes I just out and out lie - oh I'm not hungry or I ate earlier (to avoid being stuck in someone's bathroom after eating the amounts of food they think I "need"). I do think it's okay to fib. I just eat well the next day. LOL

It's useless to try and explain any of this to someone with a normal colon (who poops once or twice a day).
Marsky/Mary's story.....
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening

All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!

Post Edited (Marsky) : 4/25/2009 9:03:01 AM (GMT-6)


Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 4/25/2009 2:54 PM (GMT -7)   
Mary,
You are just a wealth of info!! Thanks so much for telling me all this.

I used to take colace twice a day, along with every other laxative known to man. Senna worked best for me, but I agree, it has a stimulant in it and I woudn't want to take it now for anything.

I've pretty much stayed with low residue today (except for a couple pieces of chocolate Easter candy!) and so far, so good. I took a lomotil early today and have been eating ok, and so far I've been to the bathroom about 7 times. Evenings are usually the worst, though, so we'll see! If I do well today, I'll try tomorrow without the lomotil. I really don't like taking meds, but it does keep me from going 20+ times some days.

You're right, I'd love to have formed stools. Most of mine are still liquidy, unless I take fiber, but fiber really makes my stomach hurt. I'm just going to stick with the low residue as much as I can and hope time will take care of the rest.

I'm a size 8/10 usually, but now I'm getting into some of my 6's. I like being a size 8, it's where I'm most comfortable. I gained about 6 pounds before I had surgery because I was eating everything in sight. I had so many "favorite meals" that the weight just stayed. I was glad to lose that, and I love where I am now, because I have a few pounds to play with! I can't believe you went from a 10/12 to a size 4! You must have really been thin!!

Good luck in job hunting! I'm going back to work the beginning of June. I just work 2 1/2 days a week, so I only have to give up lunch 2 days....or maybe by then I'll be able to figure out what will happen when I eat! That would be nice!

Maybe you can find something inexpensive to do next week for your anniversary! Do you live in the south? Warm weather? Maybe just a picnic in the park or something! I'm in Florida and our weather is amazing right now. Wish we could keep it like this all year long!

Take care and thanks again so much for the help!

Janie

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 4/26/2009 6:23 AM (GMT -7)   
Janie - my husband bought a boat last summer (what timing, when gas was $4 a gallon!). It's just a simple 18.5 ft ski boat but he loves it. We live in Cincinnati so you can usually find us on the Ohio River or a lake 20 min. from home (state run park). He would probably suggest we take the boat out to celebrate. LOL Of course I'm thinking a meal in a restaurant since I do all our cooking (we haven't eaten out in a rest. for months, probably since last October!)......we will celebrate somehow though......we have two daughters in college and the recession hasn't helped our budget any. I work for a school district and they keep saying they may cut jobs (I work of all places, in the cafeteria, around food!)......but I love my work hours, mid-day. Perfect for my situation. Relieved to know you only work 2.5 days a week. That must be a real comfort. You will quickly find that small meals and timing them is very important managing output. When we travel, I still pull back on solids. I always keep my fluid intake up but I cut way back on food. Until we arrive at our destination and then I start eating again. By now my family just knows this is the new normal for me.

Last summer we broke our new boat in for a full week on a lake in Tennessee. A floating house, one of oh 20 this marina rents out. I should dig up that topic for you, it was funny to share, that was an experience, let me tell you. Me, stuck with a marine toilet for 7 days. We all had to dispose of our tissue in small plastic shopping bags. You couldn't put anything but what comes out of your body naturally in the toilet. LOL! And of course your natural habit is to load it up with TP. We started using an outdoor garbage can for these small plastic Kroger bags. Then we'd run to the marina several times a day with a large garbage bag. By the end of the week, I wanted to use a real, regular toilet in the worst way. My husband later did say we'd never stay on a floating house again. Somehow I got thru that week. But it was an experience I don't really want to try again!

I don't know why I shared that funny little story with you. Maybe to just give you something to smile about. If I can get thru a week on a vacation floating house with a marine toilet, 9 years after TC, then you know you will adjust to this phase and get better. See, things will calm down for you. I just know they will. It just takes lots and lots of time.

Mary
Marsky/Mary's story.....
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening

All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!


Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 4/26/2009 2:26 PM (GMT -7)   
Mary,
You really did make me laugh! I can only imagine all the bags being carried out! I wonder what people thought...that is really funny. I feel like my toilet is my best friend right now. I've even thought about putting a small tv in our bathroom since I spend so much time there!

Our next door neighbors bought a really large RV last year and have asked us several times to go away for the weekend with them. We were never able to arrange our schedules, and then I had my surgery and all talk of weekend trips have completely stopped! We are very close, so I've told her all of my bathroom habits....guess they just aren't ready for that yet!! LOL I wouldn't go anyway, but I think it's funny they haven't mentioned it again!

I'm doing better the last couple days, but I've been really good about eating low residue. I wanted Chinese food so much today, but decided to wait a little longer. I may break down one night this week, though!!! Talk me out of it, please!

I'm jealous of your husband's boat. When we moved to Florida years ago, we decided to get a boat, but we never have. Luckily we've made friends who have boats, which may be even better, but we have such good weather here we'd probably use it alot. My husband saw how much work our friends do to them that he decided he was too lazy to have a boat!

Off to sit out on the patio and read for awhile...our weather is just beautiful here in Florida...how is it in Cincinnati?
Janie

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 4/26/2009 6:01 PM (GMT -7)   
Janie - we ended up using a large sized outdoor garbage can just for these neatly tied smaller bags. Then we'd remove the lawn sized bag to take to the marina. After a while I wasn't embarrassed, everyone had to dispose of their tissue somehow, somewhere. But I was a neatfreak about it. Bought disposable hand wipes, two bottles of antibacterial soap, I ended up washing my hands a lot on that trip! Near the end the marina work crew accidentally cut our water line. We had no water. I was at that point ready to pack up and go home. I had the suitcase on the master bed and was already throwing items in it. Throwing them. Ranting and raving, I can't live like this. Anyway, hubby called the marina and they promised to get the water turned back on. Sure enough, 30 min. later we had water. Hubby smiled and said, can we stay now? We paid for 2 more nights......it was a beautiful little cottage, but I kept saying - if only it was on LAND! Had a loft for our two daughters, very cute, very clean, it just had that darn marine toilet.

That RV would have one too. And the trouble I worried about, as I told my family, is my bm's are not always so neat and tidy. They're messy. I don't want anyone seeing that after I go!

I also ended up eating very, very light that trip. And then people say to me - but you were on your vacation! You're supposed to pig out! Yeah right....

This year we're back on a lake but in a state park lodge. Oh thank goodness! I'll have several bathrooms at my disposal, our room's, but many stashed all over the place, near the indoor pool, near reception hall rooms, near the restaurant. And I will know where all of these bathrooms are located too! One of the first things I do upon checking in.

I also pack more TP in my suitcase. Now I don't embarrass my family by having a plastic grocery bag with a 4 pack, but I slip one or two rolls in with my clothes. Just for assurance I'll have TP.

I've also walked by cleaning ladies carts and while they're not looking, I take one more roll, just for my hotel room, not to steal. I love to see oh 3 or 4 rolls sitting next to the toilet, just in case.....if you ask a maid for extra's, they immediately think you have a dozen people stashed in the room with you!

Oh how I wish I could come up with one catch phrase - to instantly explain all of this. If I even try they think I have an intestinal bug. They run from me!

Weather was beautiful up here today - 87! Sunny, blue skies. Perfect for boating. We were gone for 8 hours. I am exhausted. I only had half an english muffin and skipped lunch. My plan this year is to not eat before boating and not eat while boating. I hope I can stick to it. Our boat is simple, a bow rider, no bathroom.

You mentioned Chinese food. I know there were many types of cuisine I wanted early on. But each time I'd stray from that LRD I would pay for it. So be careful. In time you'll probably be able to go back to it or maybe you could prepare it and cook the veggies longer? So they're not so crisp.

Well, I'm off for a nice long soak in the tub. And maybe Desperate Housewives. Calling it a day!

Chat later......maybe this week you'll see improvement Janie. I hope so - for your sake.

Mary
Marsky/Mary's story.....
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening

All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!

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