J-pouch and possible radiation damage to my BM issues

MerkMan822

I am a 2-yr survivor of rectal cancer. My rectum was removed and I then my doctor gave me a j-pouch. It's been 2-yrs and I'm still having intestinal issues. Both constipation & loose stools....and a huge sense of urgency. Sometimes, I feel like I cannot empty...which makes sense because the rectum is a muscle to aide in pushing...so, there's been times that I sit on the toilet for an hour trying to complete my "job". I heard from a breast cancer survivor that she still has BM issues & that her intestines are still screwed up...and it's been 10-yrs for her. So, does anyone experience the same thing and would anyone have any answers/solutions to help "mend the damage" to my intestines that I feel the radiation & chemo may have injured me in my pelvis area. Thanx for your comments & feed back! bye, MerkMan822!

abrub

A recommendation that was made to me...
I didn't have the same surgery as you - I had 2 parts of my colon resected (no bag) but found that I had intestinal issues for well over a year post-op.

An Integrative Med MD recommended that I use a product "GI Revive" daily for 30 days to help my intestinal mucosa to regenerate and heal. In addition, he recommended that I take 40 billion cells probiotic daily (combination of Lactobacillus and Bifidum).

It helped; my surgeon is surprised that my gut functions so well now (better than before surgery).

Something to consider...

Good luck with all of this.

msccolon

welcome
I haven't had your procedure done, but KathiM has, and I'm sure she'll be on shortly to offer some help with this. I just wanted to welcome you to the board! Sucks you have been dealing with your issues for so long; I didn't have any real issues with my initial resection, but ever since a HIPEC/cytoreductive procedure I had done a year ago, with the accompanying massive infections, my intestines haven't functioned properly. I have to take Reglan to even get them to move, and then heaven forbid if I'm not at home during the time that my bowels would prefer to be moved. I'll be stopped up for sure, so probiotics and fiber have become my new best friends. They really help tremendously. I also find that I have to sit a while to "encourage" the stool to pass, but I'm thankful it's never taken an hour! Good luck with finding resolution to your issues, the internet is a wonderful place to find so much information!
mary

KathiM

I'll pit my bowel against anyone's...even non-cancer survivors!
I had my rectum and sigmoid colon removed, and a pouch made from descending colon.

I won't be coy, it wasn't easy at the beginning...

The colon is used to process water out of the waste, removing it, and sending the solid on it's way. The sig colon is the propulsion unit. The rectum is the storage, until it fills, and sends a message to the sigmoid colon, sphincter and the anus to open and 'let it all hang out'. At least that is the way it was explained to me, 5 years ago. So, removing my propulsion unit, and making a process organ into a storage organ is no small feat.

The first 2 years were trial and error, getting to know the foods I could and could not tollerate, sort of like a baby...I needed to try things one at a time. I found I had become lactose intollerant, and a large part of my trouble eased when I stopped eating dairy.

I stayed VERY hydrated (still try to) so that my stool stays on the soft side of 'play dough'. I don't use drugs to control the flow, unless I get diarrhea constant for more than 8 hours. I DO have a few 'everyone into the pool' parties on occasion, but it usually follows eating some 'sin' food.

Things improved, but slowly. I eat healthier now than before cancer, but nothing major...the 4 food groups...well, 5---chocolate IS a group, right??????

I have been able to maintain a weight that is, according to the BMI tables, 'the perfect number' for my height. I truly believe this is easier because of the decrease in dairy, and also I eat beef only 2 or 3 times a month (it's hard to digest). I eat bright colored fruits and vegies. Fresh, when at all possible.

I just celebrated 5 years since diagnosis in December. Since my J-pouch, May was 5 years. I have very few troubles, and can OCCASIONALLY eat ice cream, or cheese, as long as it is not too much in one day. As my subject line says, I have better toilet performance that many of my non-cancer friends (they all seem to have varying degrees of IBS...).

My advice is 'a tincture of time'. And learn what foods you need to stop eating, at least for awhile. If things get to out of control, the BRAT diet always works for me (Banannas, Rice, Applesauce, and Tea).

Hugs, Kathi

KathiM

KathiM said:

I'll pit my bowel against anyone's...even non-cancer survivors!
I had my rectum and sigmoid colon removed, and a pouch made from descending colon.

I won't be coy, it wasn't easy at the beginning...

The colon is used to process water out of the waste, removing it, and sending the solid on it's way. The sig colon is the propulsion unit. The rectum is the storage, until it fills, and sends a message to the sigmoid colon, sphincter and the anus to open and 'let it all hang out'. At least that is the way it was explained to me, 5 years ago. So, removing my propulsion unit, and making a process organ into a storage organ is no small feat.

The first 2 years were trial and error, getting to know the foods I could and could not tollerate, sort of like a baby...I needed to try things one at a time. I found I had become lactose intollerant, and a large part of my trouble eased when I stopped eating dairy.

I stayed VERY hydrated (still try to) so that my stool stays on the soft side of 'play dough'. I don't use drugs to control the flow, unless I get diarrhea constant for more than 8 hours. I DO have a few 'everyone into the pool' parties on occasion, but it usually follows eating some 'sin' food.

Things improved, but slowly. I eat healthier now than before cancer, but nothing major...the 4 food groups...well, 5---chocolate IS a group, right??????

I have been able to maintain a weight that is, according to the BMI tables, 'the perfect number' for my height. I truly believe this is easier because of the decrease in dairy, and also I eat beef only 2 or 3 times a month (it's hard to digest). I eat bright colored fruits and vegies. Fresh, when at all possible.

I just celebrated 5 years since diagnosis in December. Since my J-pouch, May was 5 years. I have very few troubles, and can OCCASIONALLY eat ice cream, or cheese, as long as it is not too much in one day. As my subject line says, I have better toilet performance that many of my non-cancer friends (they all seem to have varying degrees of IBS...).

My advice is 'a tincture of time'. And learn what foods you need to stop eating, at least for awhile. If things get to out of control, the BRAT diet always works for me (Banannas, Rice, Applesauce, and Tea).

Hugs, Kathi

OH, something else....
I took a small amount of probiotics for a long time. First, in Activia, next (when I discovered the lactose intollerance) in probiotic vitamins. I was told that it could repopulate the flora and fauna in my gut that was destroyed by the radiation.

Hugs, Kathi

RickMurtagh

KathiM said:

I'll pit my bowel against anyone's...even non-cancer survivors!
I had my rectum and sigmoid colon removed, and a pouch made from descending colon.

I won't be coy, it wasn't easy at the beginning...

The colon is used to process water out of the waste, removing it, and sending the solid on it's way. The sig colon is the propulsion unit. The rectum is the storage, until it fills, and sends a message to the sigmoid colon, sphincter and the anus to open and 'let it all hang out'. At least that is the way it was explained to me, 5 years ago. So, removing my propulsion unit, and making a process organ into a storage organ is no small feat.

The first 2 years were trial and error, getting to know the foods I could and could not tollerate, sort of like a baby...I needed to try things one at a time. I found I had become lactose intollerant, and a large part of my trouble eased when I stopped eating dairy.

I stayed VERY hydrated (still try to) so that my stool stays on the soft side of 'play dough'. I don't use drugs to control the flow, unless I get diarrhea constant for more than 8 hours. I DO have a few 'everyone into the pool' parties on occasion, but it usually follows eating some 'sin' food.

Things improved, but slowly. I eat healthier now than before cancer, but nothing major...the 4 food groups...well, 5---chocolate IS a group, right??????

I have been able to maintain a weight that is, according to the BMI tables, 'the perfect number' for my height. I truly believe this is easier because of the decrease in dairy, and also I eat beef only 2 or 3 times a month (it's hard to digest). I eat bright colored fruits and vegies. Fresh, when at all possible.

I just celebrated 5 years since diagnosis in December. Since my J-pouch, May was 5 years. I have very few troubles, and can OCCASIONALLY eat ice cream, or cheese, as long as it is not too much in one day. As my subject line says, I have better toilet performance that many of my non-cancer friends (they all seem to have varying degrees of IBS...).

My advice is 'a tincture of time'. And learn what foods you need to stop eating, at least for awhile. If things get to out of control, the BRAT diet always works for me (Banannas, Rice, Applesauce, and Tea).

Hugs, Kathi

T
I always thought the t was toast.

KathiM

RickMurtagh said:

T
I always thought the t was toast.

Hummmmm, maybe.....
But I always drank Tea...maybe I did it wrong...lol! But it works for me!!

Hugs, Kathi

rsnyder

KathiM said:

Hummmmm, maybe.....
But I always drank Tea...maybe I did it wrong...lol! But it works for me!!

Hugs, Kathi

No J-pouch
My son has no J-pouch - no room for it. He has tried everything and stool sits in his rectum all the time. It is a stright pipe according to the doctor. He stays raw most of the time as he can't empty his colon. He stays up at night and sits in sitz baths ans uses "butt paste."
What can he do and how does tea help. He is doing so well if he could find a way to keep the stool out of sitting just at the openng of the anus. Any suggestions. His doctor has been very little help. His stools are sometime just pieces as it comes down the pipe and just sits right at the opening. If he is going somewhere he just doesn't eat. He is doing well if he could find an answer to this problem. I am praying constantly. Thank you. Nana

KathiM

rsnyder said:

No J-pouch
My son has no J-pouch - no room for it. He has tried everything and stool sits in his rectum all the time. It is a stright pipe according to the doctor. He stays raw most of the time as he can't empty his colon. He stays up at night and sits in sitz baths ans uses "butt paste."
What can he do and how does tea help. He is doing so well if he could find a way to keep the stool out of sitting just at the openng of the anus. Any suggestions. His doctor has been very little help. His stools are sometime just pieces as it comes down the pipe and just sits right at the opening. If he is going somewhere he just doesn't eat. He is doing well if he could find an answer to this problem. I am praying constantly. Thank you. Nana

I would get a second opinion.....from another doctor
My first surgeon gave me a 50% chance of an external bag.

My second (the one I went with) gave me 3%...with a J-pouch as the alternative.

I do not know where you live, but this is something for an expert gastric surgeon, trained in this stuff. Mine is a UC Irvine Medical Center in Orange County, California. He specializes in low bowel resections...that is what you need to find. I can't say what can be done now, but an expert would know...

The 'tea' was part of the BRAT diet....Bananas, Rice, Applesauce, and Tea. This is a very mild diet, with a good track record of 'getting back to basics' to give the bowel a rest. It is also hydrating, to push the solid thru...

I, too, am missing my propulsion unit...so, as I said, I try to stay away from constipation...by eating non-constipating stuff. Dairy products and beef are culprits for me.

I am sending hugs for your son...sigh...it's miserable when you have pain there...he could try giving himself a low enema, nothing strong...maybe just with a water solution....but find another gastric doctor...they should have ideas...

HUgs, Kathi

qwe

KathiM said:

I would get a second opinion.....from another doctor
My first surgeon gave me a 50% chance of an external bag.

My second (the one I went with) gave me 3%...with a J-pouch as the alternative.

I do not know where you live, but this is something for an expert gastric surgeon, trained in this stuff. Mine is a UC Irvine Medical Center in Orange County, California. He specializes in low bowel resections...that is what you need to find. I can't say what can be done now, but an expert would know...

The 'tea' was part of the BRAT diet....Bananas, Rice, Applesauce, and Tea. This is a very mild diet, with a good track record of 'getting back to basics' to give the bowel a rest. It is also hydrating, to push the solid thru...

I, too, am missing my propulsion unit...so, as I said, I try to stay away from constipation...by eating non-constipating stuff. Dairy products and beef are culprits for me.

I am sending hugs for your son...sigh...it's miserable when you have pain there...he could try giving himself a low enema, nothing strong...maybe just with a water solution....but find another gastric doctor...they should have ideas...

HUgs, Kathi

Markman I had radiation
Merkman I had radiation issue I had the same thing blockade
maybe you should see a surgeon I had major surgery and the Dr
took 20" of my small intestine out I was very sick if you
had radiation for colon or rectal cancer then please see a
DR. he will do a CT scan to see if you have and thing wrong
with your intestine,.

MerkMan822

qwe said:

Markman I had radiation
Merkman I had radiation issue I had the same thing blockade
maybe you should see a surgeon I had major surgery and the Dr
took 20" of my small intestine out I was very sick if you
had radiation for colon or rectal cancer then please see a
DR. he will do a CT scan to see if you have and thing wrong
with your intestine,.

All the idea's are great
Thank you all for the responses! I do stay hydrated....I love the vitamin water! I never thought of taking beef out of my diet. I'll try that! Last week, I just switched to soy milk...because I thought dairy might be a problem. I'll have to skip the string cheese & yogert too. Does anyone know about how a gluten free diet might help? I need help gaining weight...as I'm 6 ft tall & about 140 lbs. Any idea's...? Chocolate is out...too much caffiene! I don't drink booze either...because I think that is a problem for intestines too. I'm trying Juven, by Abbott's Labortory...and was wondering if anyone tried Juven before? It's suppose to be a healing product. I'm thinking that the BM issues & pain are from radiation injury...and maybe a new CT scan will show something. If I need more surgery...I'm fine with that. Anything to help! Remove a blockage or scar tissue.

Thanx again for all you advice...and look forward to more...! TTFN