HELP - wife has rectum removed and constantly on toilet! what to do?

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Gerard_W
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/12/2010 8:03 AM (GMT -7)   
hi

my wife had ovarian cancer and during surgery they also had to remove the rectum. Stoma wasnt necessary. Rest of her intestine is intact and working.

Four months after the operation, the wounds have practically healed. But now she has constantly the urge to go to the toilet; about 30-40 times a day! She is only in bed, because getting up means for sure toilet only.

Most of the times she does have solid stool, but very little. Doc says that it should go better in time when the rest of intestine takes over the role of rectum. I guess it doesnt help that she still needs to do chemo therapy as well.

But how long does it take to get better? What can she do in the meantime to go down on the toilet frequency? Please help, it is driving her crazy.

thnks so much for your feedback.

Gerard

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/12/2010 8:32 AM (GMT -7)   
Does your wife still have her colon? Is her colon directly hooked up to her anus or does she have a jpouch?

This is excessive and this would be a cause of concern for me. Her frequency should be much much lower. Is she taking bowel slowers like lomotil or imodium? She can take up to 8 per day if needed. I suggest that your wife get with a GI and get on a program to get this under control. I'm not sure if chemo is contributing to her problem or not but a GI could determine that. If the current doctor, who says it will get better, is a GI then I recommend a more assertive appt with him or change GIs. Her situation is pretty intolerable.

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


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 1/12/2010 12:34 PM (GMT -7)   
I had my sigmoid removed, which is in a sense the same part your wife is missing - the rectum? I also had 15 inches of my colon removed above where the sigmoid should be. My surgeon left about 10% of my old sigmoid, pulled down my colon and reattached me. Now my Gastro doc has been the one who has performed numerous post-cancer Flex-sigs, Colonoscopies, and he swears my surgeon did an excellent job of reconnecting me.

However, I was left with multiple bm's as well. In the beginning I was confined to my bathroom and bedroom area. I couldn't leave my house. Until I read about chemo patients who had severe diarrhea from treatments and multiple trips to the bathroom each day. Many of these patients found that a plain diet, specifically one called a Low Residue Diet, greatly helped them. At this point I had been eating fresh fruits (pineapple, strawberries, etc.), whole wheat products, and I was just a raw mess. So as I looked over the list of foods on a LRD it all made sense to me. My insides were just inflamed, very, very irritated and I was almost chained to my toilet.

Long story short, I went on the LRD and within 48 hours I was a new person. Now I still had multiple bm's, but at least with a plain diet, the stool was not D but rather formed and easily passed in any public bathroom. I had young children to care for at the time and my daughters missed going places with me. I was so happy to have found a diet that soothed my irritated GI tract.

I kept a food journal as well, recording every single thing I ate and drank, in a 24 hour period, if I was under a lot of stress at the time, and at the end of each day, in the bottom right hand corner of the notebook page, I would rate each day - great, good, bad. That way when a social event was coming up and I wanted to make sure I felt my best, I would look back at the foods I ate on a great day and mimic that specific day.

I also ate for 12 hours on, 12 hours off. I didn't have 3 large meals anymore but rather 4 to 6 small meals. After dinner I would stop eating all solids, but I would continue drinking water until bedtime. By giving my GI tract a chance to quiet down without solids coming down the pipe, I could get a full night's sleep that way.

What else......I avoided candy, nuts, popcorn, etc. Foods I knew would irritate my gut.

If your wife finds that a LRD helps her, she will find that over time she'll find foods that agree with her the most.

I've been on this diet now for 10 years. It's just simply the way I have to eat now. I accepted long ago I would have multiple bm's each day, as long as I eat, because internally there isn't a reservoir/sigmoid/rectum to collect stool and hold it back. I have such pressure if I hold a bm over 30 minutes. It feels like I will go a lot, but in amount, it's a very small amount. Space through out my day (instead of one bm as before cancer/surgery). Once my surgeon explained why I have so much trouble and redrew what my colon looks like now, it made sense to me that the stool just keep coming down. I can actually feel it slide down each time. I also take a mild, pediatric stool softener dose each night. That's helped my stool remain as consistent as possible.

I used to hope for 6 to 8 bm's per day but I've given up that dream. I go about 10 to 12, sometimes more. But if I eat plain food, the stool is formed and then I can use any bathroom. I've gone everywhere just about - the mall, grocery, even a portalet!

It's just simply the way things are for me. It might be too soon for your wife to come to this realization. Suggest the diet to her and ask her surgeon to see if he approves. Mine did.

I wish her well.

Mary/Marsky
- Rectal Cancer 4/29/99, Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, temporary colostomy, reversed 8 weeks later)
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Takes Colace 50 mg each evening

Post Edited (Marsky) : 1/12/2010 12:37:14 PM (GMT-7)


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 1/12/2010 3:43 PM (GMT -7)   
Gerard, that really does sound excessive.. I have had a few days since my surgery where I went excessively (sure it must have been something I ate) but for the most part.. no where near that amount.

I was under the understanding that if the whole rectum is removed, you need to have a j-pouch or ostomy....?

Marsky, how long ago did you have your surgery? I ask because you mentioned: "I have such pressure if I hold a bm over 30 minutes. It feels like I will go a lot, but in amount, it's a very small amount. Space through out my day... I can actually feel it slide down each time" This is exactly what I feel and how I go! (I can HEAR it and FEEL it sliding down!)

I'm almost 5 weeks post op from having a low anterior resection, plus rectopexy. Basically, they removed my entire sigmoid and 1/3 of the upper half of my rectum (18" of colon). It was done for non cancerous reasons (rectal prolapse, severe constipation and obstruction from sigmoidocele). I've been on a basically a low residual diet - but also taking 3 doses a day of Miralax. My stools have not yet been formed.. and right now I'm going around 8 times a day. Yesterday, I was given the green light that I could eat anything I want, and reduce the MiraLax.... so I'm waiting to see how it goes...
~Jenise~


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 1/12/2010 6:04 PM (GMT -7)   
Hi Jenise - here are my history stats:

April 6, 1999 - rectal malignant tumor diagnosed.
April 29, 1999 - colon resection/cancer surgery, 90% of sigmoid removed, 15 inches of colon removed, temporary colostomy, gallbladder removed (pre-op cat scan revealed hundreds of gallstones).
June 26, 1999 - temporary colostomy reversal.

This is about the time when all the "fun" began for me.

Having a temporary colostomy wasn't really that bad. I managed quite fine actually, only had one or two mishaps, had my bag fill completely 4 times in a row with army green stool (from eating a bowl full of blueberries, never did that again!), etc.

about 2 or 3 weeks after my takedown is when I learned about low residue diets.

Jenise - go easy on that green light. If I were in your shoes I would introduce foods not on a low residue diet - slowly. Ever so slowly. Don't just jump into a high fiber diet! But wouldn't that be something if you could eat a normal diet. I so wish you can after all this.

Yes I am all different down there, inside, sometimes I get those rectal pains or spasms that people mention on these boards. I hate when they happen. If I am home I hurry along the bm's, inducing them almost, with hot tea. I just sip about 3 or 4 cups, the caffeine encourages more bm's and I get the whole awful phase over with.

I seem to go thru about 4 stool stages too - 1. formed, easily passed, no mess (my favorite, of course). 2. semi-formed, getting messy. 3. putty like stool (my least favorite), this stage can go on for days and days. 4. all out diarrhea. If I am home and I experience D, I sometimes just let my body do its own thing now. I try not to stop it because after the D is over, I do feel better. And I am guaranteed an almost normal day the next day. Woohoo.

Now one thing I did faithfully for a while (oh a year or two) was weekly enemas. I was desperate on a vacation with my family. After my children and husband went to sleep I did a Fleet's enema. I had been stuck in that putty stage and missing all the vacation fun. I felt just great for the rest of the trip. A clean out really turned things around for me. I asked my doctor later if I do weekly enemas. She said sure, just go into one as fully hydrated as possible. And eat a healthy diet right away (unlike you do for procedure preps and liquid diets). They did help me for a long time, but a few seemed to last much longer than an hour. One for 12.

Now I just manage by following the LRD, keeping my stress level as low as possible (I've perfected the word no in as a polite way as possible to get out of social functions I know I cannot do!), taking Colace each night, and a Probiotic pill (found in the organic chilled food section at Krogers).

I feel like a walking and talking puzzle. If all my puzzle pieces are in place, I do okay. Not great, not bad. If one is out of whack, I am a major mess.

I've worn out the insides of all 3 of our toilets here at our house. At least twice. LOL I tell my husband if we ever have a house built again, I want two toilet drains to the curb, not one, and at least 10 toilets (we can stash them all over the place, master bathroom could have 2, laundry room could have 1, one could go down by the furnace, etc.). Of course I am joking, he thinks but my gosh, if we ever won the lotto, I will be the whacky woman with a dozen toilets. That would be sweet, having my own where no one would ever knock on the door and if one was out of order I'd have another at my disposal.

The things you take for granted before colon surgeries. If anyone told me my life would revolve around a bathroom, I would have told them they were just crazy!

But sadly, this is my life but I did survive cancer.
- Rectal Cancer 4/29/99, Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, temporary colostomy, reversed 8 weeks later)
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Takes Colace 50 mg each evening

Post Edited (Marsky) : 1/12/2010 6:07:59 PM (GMT-7)


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 1/13/2010 5:55 AM (GMT -7)   
Marsky, the most important thing is - you're a survivor! I can not imagine going through the stress, fear and such and would imagine the bathroom issues is a small price to pay in comparison of the alternative. Thanks for sharing your story, and your BM info! There is no other place except this forum where I am free to ask and talk about poo!

I'm finding that you're right, it is all a puzzle and I haven't yet figured out where to actually start putting it all together! Because of all the great advise of people here, I plan on going slow as I re-introduce new and normal foods. I anxious, as I find I am gaining weight on the LRD.. and I worked hard last year to get to this weight! Since surgery, I'm up 2.5 lbs! Thank s again for sharing!!
~Jenise~


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 1/14/2010 5:32 AM (GMT -7)   
Gerard and Jenise - a few more things to add, to caution you about: the contrast you drink for cat scans completely cleans me out now. I had had several cat scans before my colon resection/surgeries and the contrast never bothered me. The cat scans and primarily the contrast I've had post-surgery have done better bowel clean outs than any laxatives my doctors can prescribe. First time I thought I'd go grocery shopping on the way home from my cat scan. I was barely into my shop (planned on being there for an hour and doing a complete grocery shop). Third aisle and my stomach was doing odd things. Sensations I had never experienced before. I decided to pay for the few groceries I had in my cart and go straight home. Good thing I did that! All you know what broke loose. I was confined to my bathroom for about 4 hours. But didn't feel all that sick, just all out D. I joked with my doctor later - can I please drink the cat scan contrast instead of your bowel prep? He laughed and said - of course not, you silly woman!

Subsequent cat scans made me a little leary so the clerks allow me to drink half of the contrast and begin my doses close to my appt. time. As soon as I said I had a bowel resection they knew I had to consume the contrast closer to my appt time. Thank goodness they were so understanding!

Liquids and solids just seem to travel thru my GI tract quickly now. As long as I know this going into a procedure, meal, traveling, etc. I manage fine. For example for traveling by car, I eat good meals the day before but the day of, very, very light. I continue drinking water but do not eat much while on the road. When we arrive at our hotel, I resume eating right away. These mini-fasts do seem to work for me.

Gerard - I am hoping since your wife is also having chemo treatments, when they are over, she will probably see the bm count go way down. I've never had near as many as your wife is having. I was Stage I, I didn't require treatment.

Take care you two.....give my best to your wife Gerard.

Mary/Marsky
- Rectal Cancer 4/29/99, Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, temporary colostomy, reversed 8 weeks later)
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Takes Colace 50 mg each evening


RockyII
New Member


Date Joined Jan 2010
Total Posts : 1
   Posted 1/16/2010 8:14 PM (GMT -7)   
I had my lower anterior resection on Mar 12, 2009 after 5 1/2 weeks of chemo and radiation. I was diagnosed with rectal cancer. Had 15 inches removed of the sigmoid and upper rectum. ending up with a temporary ileostomy for 7 months. The reversal suregery was completed on Oct. 12, 2009. Cancer was diagnosed as stage III with no lymph involvement, very lucky. Have good days and bad days. But oh, the butt pain on those bad days. Not too bad on good days. Hope it gets better with time. I started taking Beneful fiber tablets and seems to help some but still have the butt burning pain.

Gilda
Regular Member


Date Joined Apr 2009
Total Posts : 194
   Posted 1/18/2010 11:36 AM (GMT -7)   
Marsky said...
Hi Jenise - here are my history stats:

April 6, 1999 - rectal malignant tumor diagnosed.
April 29, 1999 - colon resection/cancer surgery, 90% of sigmoid removed, 15 inches of colon removed, temporary colostomy, gallbladder removed (pre-op cat scan revealed hundreds of gallstones).
June 26, 1999 - temporary colostomy reversal.

This is about the time when all the "fun" began for me.

Having a temporary colostomy wasn't really that bad. I managed quite fine actually, only had one or two mishaps, had my bag fill completely 4 times in a row with army green stool (from eating a bowl full of blueberries, never did that again!), etc.

about 2 or 3 weeks after my takedown is when I learned about low residue diets.

Jenise - go easy on that green light. If I were in your shoes I would introduce foods not on a low residue diet - slowly. Ever so slowly. Don't just jump into a high fiber diet! But wouldn't that be something if you could eat a normal diet. I so wish you can after all this.

Yes I am all different down there, inside, sometimes I get those rectal pains or spasms that people mention on these boards. I hate when they happen. If I am home I hurry along the bm's, inducing them almost, with hot tea. I just sip about 3 or 4 cups, the caffeine encourages more bm's and I get the whole awful phase over with.

I seem to go thru about 4 stool stages too - 1. formed, easily passed, no mess (my favorite, of course). 2. semi-formed, getting messy. 3. putty like stool (my least favorite), this stage can go on for days and days. 4. all out diarrhea. If I am home and I experience D, I sometimes just let my body do its own thing now. I try not to stop it because after the D is over, I do feel better. And I am guaranteed an almost normal day the next day. Woohoo.

Now one thing I did faithfully for a while (oh a year or two) was weekly enemas. I was desperate on a vacation with my family. After my children and husband went to sleep I did a Fleet's enema. I had been stuck in that putty stage and missing all the vacation fun. I felt just great for the rest of the trip. A clean out really turned things around for me. I asked my doctor later if I do weekly enemas. She said sure, just go into one as fully hydrated as possible. And eat a healthy diet right away (unlike you do for procedure preps and liquid diets). They did help me for a long time, but a few seemed to last much longer than an hour. One for 12.

Now I just manage by following the LRD, keeping my stress level as low as possible (I've perfected the word no in as a polite way as possible to get out of social functions I know I cannot do!), taking Colace each night, and a Probiotic pill (found in the organic chilled food section at Krogers).

I feel like a walking and talking puzzle. If all my puzzle pieces are in place, I do okay. Not great, not bad. If one is out of whack, I am a major mess.

I've worn out the insides of all 3 of our toilets here at our house. At least twice. LOL I tell my husband if we ever have a house built again, I want two toilet drains to the curb, not one, and at least 10 toilets (we can stash them all over the place, master bathroom could have 2, laundry room could have 1, one could go down by the furnace, etc.). Of course I am joking, he thinks but my gosh, if we ever won the lotto, I will be the whacky woman with a dozen toilets. That would be sweet, having my own where no one would ever knock on the door and if one was out of order I'd have another at my disposal.

The things you take for granted before colon surgeries. If anyone told me my life would revolve around a bathroom, I would have told them they were just crazy!

But sadly, this is my life but I did survive cancer.


Gilda
Regular Member


Date Joined Apr 2009
Total Posts : 194
   Posted 1/18/2010 12:04 PM (GMT -7)   
Hi Marsky,

I would really like to ask you a couple of questions, privately. Could you please send me an email address where I can reach you? I would really appreciate this. My email address is: sinda12345@gmail.com. I will look forward to hearing from you!

Sinda

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/18/2010 3:03 PM (GMT -7)   
Hi,
 
I didn't have time to read all the posts, but if your wife had the top of her rectum removed, that is called a low anterior resection.  One of the complications of that is multiple trips due to reduced rectal volume.  I pray for her and her cancer issue and that that many trips diminishs.  Sincerely, Rosemary

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 1/18/2010 5:33 PM (GMT -7)   
I believe he meant to bottom part of her colon. But I could be wrong. Hoping for an update on how she is feeling this week.
- Rectal Cancer 4/29/99, Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, temporary colostomy, reversed 8 weeks later)
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Takes Colace 50 mg each evening

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