Major problem with diarrhea 1 yr after subtotal colectomy

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Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 4/10/2010 2:21 AM (GMT -6)   
I am so depressed!  April 2, 2010 marked the 1 yr. post-surgery date for me and I still can't live any type of a normal life due to chronic diarrhea.  Prior to my surgery I had "colonic inertia,"  a very long and redundant colon that had strictured in places.  My surgeon felt it was best to remove the entire colon so he did a subtotal colectomy with an ileo-rectal anastomosis.  I have anywhere from 8-20 BM's/day and it is controlling my life!  It doesn't seem to matter what I eat.  Some days aren't too bad with semi-formed stools; then the next day can just be "out of control" diarrhea all day and night.  Now my gastro is talking an Ostomy and then maybe a J-Pouch.  I can barely even think about more surgery but I can't live like this any longer either!!!   Can anyone direct me to someone who maybe started with the diarrhea problems after the subtotal colectomy but then it resolved itself.  I really need some hope; I am getting so depressed.
 
Thanks,
Gilda

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/10/2010 7:25 AM (GMT -6)   
Gilda, so sorry that you are having this problem. I have read many people say eating a low residue diet is best. You can google low residue diet. Have you tried immodium? There is also a prescription medicine, but I can't remember the name of it???? I have also read about people eating marshmallows with an ostomy, so I assume this could have the same effect thickening your poop.

Maybe having a j-pouch will help? Isn't a j-pouch supposed to act as holding tank until you can make it to the restroom? Do you have urgency or loss of control? I know there is a website, I think it is j-pouch.org where you can ask questions about it.

It must be very discouraging for you to have went from one extreme to the other. I wish I knew the magic answer to give you. Just keep searching and experimenting with foods and
medications.

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 4/10/2010 7:48 AM (GMT -6)   
I've been on a low residue diet for almost 11 years now.

I am missing 90% of my sigmoid (where my cancer was located) and about 15 inches of the my colon above this spot. I virtually have nowhere inside my tract to allow stool to back up, collect, solidify and then be released as it used to be (one or two dumps a day, pre-cancer days). Soooooo, once my new colon surgeon showed me a glossy diagram of a normal GI tract and then drew my new tract, putting the two side by side, I didn't realize why I do have this much trouble! As long as I continue to eat solids, I will have bm's. They just come, all day long. BUT, by eating low residue foods and avoiding the ones that do mess me up (whole wheat products, fresh produce such as pineapple, all berries, the baby greens type salads, etc.) I can keep the stool formed and not D in consistency. While I do occasionally have bad days - my body seems to go thru a natural purge of its own, I have a near clean out (similar to a bowel prep but without D), I experience one bm after another when this happens and it can last for an hour or more - by eating plain foods on this diet, I truly can control my situation. I also skip meals for outings, for example my husband I went out last night to celebrate a friend's BD. I had a small turkey sub for lunch (I work part time and get home from work by 1), then a plain yogurt by 4. Then no more solids so I could go out by 9. It worked. No bm's. But I should add that I accepted long ago, after seeing what the new me looks like inside, that I will experience multiple bm's per day, for the rest of my life. My goal now is to keep the bm's as formed as possible, so I can use any bathroom, anywhere, to release them. And I have gone just about everywhere too! Even a portalet once.....

So for me, it's a combination of the low residue diet, keeping my stress level as low as possible (I have perfected how to say no to requests!), making sure I do have several foods per day my body seems to need (the Brown Cow vanilla flavored yogurt, a banana, a plain english muffin for breakfast, plain white rice, etc.), a low dose of stool softener (I prefer 50 mg Colace), a probiotic pill for good measure (can't hurt!), etc.

I joke I am a walking, talking, breathing human puzzle. If one of my important pieces are missing, I am a mess. So I don't have great days on a consistent basis but rather, good days, enough to be able to have a part time job.

My husband jokingly refers to my diet as the white diet because so many of the foods on it are all white. LOL!

One final comment, a food diary is vital to keep in the beginning if you're going to consider a LRD. Record every single thing you eat, drink, if you take meds (pain relievers, antibiotics, antihistamines, etc.), under an undue amount of stress, etc.). Later you will see a pattern begin to form of what does agree with YOUR gut. We're all different. What works for me or one of us, may not work for another. But by reading what others have gone thru, have tried, what has worked for them, etc. - it's all very invaluable IMHO. More helpful than what a doctor will tell you. We are the folks who have walked this oh so fun GI tract out of whack walk - not!

Good luck! Feel free to ask me anything. Anything at all, I an absolutely no longer embarrassed to discuss the GI tract (that phase lasted only months!).

Mary
- Rectal CA 4/29/99, Stage I, 90% sigmoid/15" of colon/GB removed, temporary colostomy, reversed 6-26-99
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Colace 50 mg each evening

Post Edited (Marsky) : 4/10/2010 7:51:43 AM (GMT-6)


wandering soul
New Member


Date Joined May 2016
Total Posts : 2
   Posted 5/15/2016 9:04 AM (GMT -6)   
Dear gilda,
I am new to this post and when I read your post I thought I was reading about myself. I had 90% of my colon removed due to a perforated bowel Jan. 29th of 2016. Recovery is ok, but my bowels control my life. I just turned 73 and had no symptoms of any problems and had emergency surgery. I used to work as a psychologist, rode my bicycle miles a day, went to movies etc. Since the surgery my life is controlled by if, when, where are toilets, when will I be able to leave the house? I wanted to go back to work in nursing homes, but won't be able to because of the need to be near a toilet all the time. I have yet to meet with a gastroenterologist and nutritionist to see if there is something that will allow me to take a flight to a class reunion. The flight lasts 45 minutes and I doubt I can last that long on some days. As you can tell I am depressed and talk with a therapist who has no idea what it is like to have this disorder. I don't know what a low residue diet is like but will google it and see if that helps. I can't thank you for your post. Thanks again. Sandylee

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15139
   Posted 5/15/2016 9:24 AM (GMT -6)   
wandering soul, this post is from 2010, so I do not know if Gilda is still around. I think a lot of us can relate to what you're going through. I had UC and my life was completely ruled by the toilet. I think you need to get get checked out to see what is going on. I would think with your natural rectum, you should have a great chance at a high quality of life. Unfortunately, the colon is where the majority of fluids are absorbed, so without one, you will go more often and it can be less formed. It really depends what you eat. Have you tried any medication to slow things? Have you been scoped to see whether everything looks healthy?

I had the j-pouch surgery and I am doing very well. I would think with your natural rectum, you would be doing better than we do with a j-pouch. You need to see a doctor and find out what's going on.

You also need to consider whether your expectations are realistic. People with j-pouches go to the bathroom between 4 and 12x a day, I bet some go more. I usually go about 6x, but I can hold it, it's quick and easy, no pushing and waiting. Consistency varies a ton, sometimes liquid, sometimes pebbles, sometimes mush. You shouldn't allow your future to be impacted over this forever. I personally would rather live with an ileostomy than be stuck at home indefinitely. I do not think that's on the table at this point though. You can't do anything until you find out why you're having so much trouble.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

wandering soul
New Member


Date Joined May 2016
Total Posts : 2
   Posted 5/15/2016 5:48 PM (GMT -6)   
Notsosickgirl,
Thank you for the information. I will follow all of your suggestions. Thank you again.

Sandylee
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